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Date: 25.03.2009
From: Tracy

Subject: Sulfasalazine OR Methotrexate?

Hi all,

I've just been diagnosed with RA and have been given a choice (but not much info) of which drug I'd prefer to take! either Sulphasalazine or Methotrexate. My Rhuematologist is pushing more towards MTX but I just wondered if anyone has taken both/either? I've read quite a bit on here about MTX side effects/benefits but haven't found any for Sulpha...

Any info would be greatly appreciated... I'm waiting for an appt. to meet with my Rheumy Nurse which could take about a month so I've got until then to decide!

Cheers
Tra
:)
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Date: 25.03.2009
From: Karen

Subject: Re: Sulfasalazine OR Methotrexate?

Hiya, Ive been on sulfasalazine since last July, ive been taking 5 tablets a day (cut it down to 3 for a while - big mistake).
Initially I had a few side effects: headaches, bruising very bad daily, no appetite -ive lost a stone since starting them. Yes these side effects aren`t pleasant but they don`t last forever and I always said to myself i would rather experience these side effects than permanant joint damage or being immobile.

6 months on i don`t have any of the above side effects from the sulfasalazine and couldnt live without them, if i miss a few here and there it shows in my body.

I am quite young and the dr suggested them over mtrx as i may want to consider trying for a family. He really made the choice for me.

Hope you are doing okay x
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Date: 26.03.2009
From: yesmeducky

Subject: Re: Sulfasalazine OR Methotrexate?

Hi everyone,
I too have just been diagnosed with RA . I was also given the choice between the two drugs. I opted for the Sulfasalazine only really because of weighing up the potential side effects, even the rarest ones, one being lung problems. That kind of clinched it for me and probably very naive of me too. This is all very new to me. I tried to push the rheumy to make the decision for me but she was very keen that it was my choice. She said that they were both equally effective. I started the Sulfa tablets almost 3 weeks ago and will have increased the dose to up 3 x 500mg tomorrow. So far i have tolerated the meds very well. If anything and it's quite fleeting is feeling just a tad nauseous. Again not really anything to groan about is a slight headache. Neither symptoms are a problem to me at the moment and i believe these will fizzle out as i get used to the drug. I hope this will help you towards a decision though everyone can respond differently. Best wishes, Heidi
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Date: 26.03.2009
From: Jill

Subject: Re: Sulfasalazine OR Methotrexate?

Hi Tracy

I began Mtx 2 years ago, and 8months or so later I was given Sulfasalazine, because i wasznt feeling any different being on just mtx, anyway... Sulf didnt agree weith me, stayed on it for at least 7 months, it made me feel very sick and with stomach probs... my condition worsened, and eventually I was put on Enbrel..THANK GOD!! been taking Enbrel Injections now for over a year along with Mtx, and I have had no real side affects, except dental probs, I do get very tired.

anyway for me personally, I disliked Sulfasalazine, didnt agree with me, but we are all different,

Gook luck, let us know how u get on

Jill
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Date: 27.03.2009
From: christine

Subject: Re: Sulfasalazine OR Methotrexate?

hi every one, ive had all that the mex and sulf and hydra, all i take now is the emblel, and pain killers when really needed, i sussed the nhs out, they try you on all the stanard drugs first, in stead of giveing you the ant tnf, thats cause is very exspensive, their not stupid, i had to suffer in angony for three years, before i got it, im alot better now on the embrel, i just dont think its fair people have to suffer like this, when it all comes down to money.christine
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Date: 27.03.2009
From: ¦Jill

Subject: Re: Sulfasalazine OR Methotrexate?

Totally agree with u there Christine...its becoz of the cost! makes me sick...thats y on here if people that have just been diagnosed with this chronic disease, I try and get them to ask the specialists for these drugs, In the begining I didnt even know that these meds existed, or I would have fought hard for them! I didnt even know that we were allowed to take morphine for pain....so all you newbies that have just recently been diagnosed.DONT accept the pain your in.... Look into the drugs that us lot are on...and Good luck

Jill
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Date: 28.03.2009
From: Tracy

Subject: Re: Sulfasalazine OR Methotrexate?

Hi all, again

Thanks so much for your replies ... they're all very interesting, and varied - as are we!

So I suppose it comes down to personal choice, trial and error. I may do some more investigating into the anti-TNF drugs first.

I just found out that a colleague and friend of mine has tried both Sulph and Meth, struggled for years with side effects/no effects, ended up on Meth and Embrel which she's now been taken off of because they think the Embrel caused her to have a severe attack of Raynaurds over Christmas - she's now back on Meth but in injection form and thinks she's doing okay at the mo! touch wood.

Anyway I've got a few more weeks to decide... thanks again, it's been really helpful :)

Take care
Tra
:)
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Date: 19.04.2010
From: victoria

Subject: Re: Sulfasalazine and Methotrexate?

Hi I am going on both Sulfasalazine and Methotrexate will they work together?
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Date: 20.04.2010
From: Abbie

Subject: Re: Sulfasalazine OR Methotrexate?

Hi Tracy! I think as others have said it's personal choice and both drugs effect everyone differently with both effectiveness and side effects. I was diagnosed early Aug last year and given 1st depot steroid injection, put on mtx 15mg. Had awful side effects from mtx so split it half weds, half sun then Only side effect was the tiredness. You have to bear in mind though it can take up to 6months to prove effective in some people so perseverence is the key. After 6months my pain had worsened, CRP & ESR had risen and had new places effected so was put on to injections and given my 3rd depot steroid injection. With the mtx injections, again Only side effects are tiredness. Unfortunately after six weeks pain was so bad I was on morphine CRP was 38.8 & ESR was 31 so now on course of steroids and increasing my mtx shots to 17.5mg for 4wks then up to 20mg will go back 4wks after that because He then wants to start me on an anti TNF aswell as mtx If things still not good but not sure If I can have them as in remission from a brain disease and he's not sure If they'll they'll flare it up. I think whatever road you take it's all trial, error and perseverence. I hope you can make a choice and things start to improve for you! Go well Tracy XXX
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Date: 20.04.2010
From: Louise

Subject: Re: Sulfasalazine OR Methotrexate?

Sulfa worked for me :)
Personally I would start with the least toxic drug and work my way up the drug ladder as needed. At least you hopefully then leave yourself with options for the future if your disease gets worse. Most dmards seem to need a good trial of 6 months or so to get the full effects and many of the milder side effects seem to go away if you can tolerate them for a few weeks or so. Hope this helps.
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Date: 20.04.2010
From: jill

Subject: Re: Sulfasalazine OR Methotrexate?

Hi We r all different, I was on MTX, didnt seem to work, then put on sulpha, made me very unwell, on it 6 months, hospitalised yet again, and was taken off it, now on MTX along with Enbrel, works very well combined...I tend to agree with Louise, work up the ladder...good luck
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Date: 25.01.2011
From: Caro

Subject: Re: Sulfasalazine OR Methotrexate?

I was diagnosed with RA last year. On MTX, and Plaquenil and now in the 5th week of Sulfasalazine and feeling really rough. VERY tired, very stiff (more than I was 4 weeks ago!) and feel as if i am carrying an additional couple of stone round with me all the time. Very tearful as well. Want to stop taking them but am awaiting a call from the nurse specialist before I do. Not getting on well with them at all though Next stop anti TNF's.
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Date: 26.01.2011
From: Dalton

Subject: Re: Sulfasalazine OR Methotrexate?

Hi, I think the best thing would be to try the sulphasalazine first and then progress to Methotrexate if need be as the sulpha is less toxic than methotrexate. I took Sulphasalazine for about 12 - 16 weeks and then had methotrexate added to it. I found the combination of both made a MASSIVE difference. I was literally crippled before taking them both and had to have regular steroid injections but its so much more manageable now. I take 4 sulphasalazine a day and 20mg of methotrexate a week. You need to ask the doctor about taking folic acid when on methotrexate as it reduces the side effects, I take 5mg folic acid a day for 6 days a week (not on the day I take methotrexate - as methotrexate is just once a week). I also take 25mg of amitriptyline to help with pain and insomnia. HANG IN THERE with any of these medicines as it does take about 12 weeks for the medication to work and the side effects will (usually) subside after about 12 - 16 weeks. I glad I stuck with it as at first I felt really sick and had headaches and lost weight as I couldnt eat but for me it did all subside but you have to stick at it for about 12 - 16 weeks - it seems like a long time but for me it was worth it as the results are good. Hope this helps. Obviously we're all different how we react to medication but hopefully you'll go on okay.
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Date: 27.01.2011
From: cookie

Subject: Re: Sulfasalazine OR Methotrexate?

I have been on sulphersalazine for about 16 years with no side effects other than orange wee! !!!! Lol have been reasonably well controlled up until last year. Dont get on well with mtx so am inprocess of being assesed for anti tnf so i would say go with the flow and see what works best for you xx
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Date: 29.01.2011
From: athena

Subject: Re: Sulfasalazine OR Methotrexate?

hi,

i was diagnosed with RA last october,was put on sulpha first as was told it has less side effects then mtx,was ok for the first month then started feeling really tired,had a rash on my arms but nothing serious and got told i would adjust to it, a week later i went yellow,had awful stomach pains,vomiting,and couldnt keep awake,was taken into hospital and told to stop the meds straight away,my liver is still abnormal and now cant take any meds until the blood tests show its normal again,the ALT was 9 times highter then it should be, i think its rare to get a reaction like that tho so please dont let it scare you, just wanted to share my experience with it.
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Date: 30.01.2011
From: Jeff

Subject: Re: Sulfasalazine OR Methotrexate?

Why are you all so fatalistic about taking these meds. Be more proactive and positive for goodness sake.
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Date: 30.01.2011
From: gail

Subject: Re: Sulfasalazine OR Methotrexate?

Because jeff we have constant pain. In some cases have lost jobs homes relationships. Cant in some cases take care of ourselves people find it hard going to deal with these issues ona daily basis day inday out. We get comfort from each other and supporting one another......so if you dont have anything. SUPPORTIVE to contribute then please BUTT. OUT
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Date: 30.01.2011
From: x kerry x

Subject: Re: Sulfasalazine OR Methotrexate?

here here gail!!
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Date: 31.01.2011
From: Jeff

Subject: Re: Sulfasalazine OR Methotrexate?

"Because jeff we have constant pain."

All the more reason to look for something that works and won't damage your heart, kidneys, lungs etc. The info is all online. Just look. I'm not suggesting you all stop taking your medication this minute. All I'm saying is look for a safer alternative while you are on medication, and when you have found it, then stop taking the meds. For example magnesium is an effective arthritis painkiller, as is Rosehip--but not many doctors are aware of this. In fact Rosehip was studied scientifically for its pain relieving properties with RA patients. See:

http://news.bbc.co.uk/1/hi/health/6763017.stm
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Date: 31.01.2011
From: x kerry x

Subject: Re: Sulfasalazine OR Methotrexate?

jeff do you have arthritis? And have you tried these alternative treatments? Im only asking because you seem positive they work better than traditional meds, i just wonder if that confidence comes from personal experience or from things you have read on the internet? Im willing to try anything to rid my pain, but id rather do it in a way that has been proven to work, and not just by some doctor that ive never met, but by someone that is living proof.
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Date: 31.01.2011
From: Jeff

Subject: Re: Sulfasalazine OR Methotrexate?

To be truthful, I haven't been diagnosed with arthritis yet. I say "yet" because I have to wait for the results of a blood test to confirm whether or not I have it. But I seem to have the symptoms of RA, although very minor. But my doctor is open to the idea that I do have arthritis, hence the blood test being arranged.

Once my arthritis is confirmed, I will refuse all drug related treatment for disease modification and pain control, as I've read about the horror stories involving the drugs for these. I will seek a cure using natural herbs and food supplements, and changing my diet. I have read (and am convinced) that both RA and osteoarthritis are curable. There are simply too many testimonies from people who have gone the non-drug route and reversed the illness for me to rationally dismiss these stories. You may say that I'm putting a lot of faith in this, and you are right. But I think most of you who are using drugs are similarly doing so based on faith.

I can understand why some of you are afraid to try non-drug treatments, as most of you have probably been on them a long time, and feel insecure about trying something new to you. I am not critical of you for taking this attitude. If I had been on drugs all that time I would be cautious as well. All I am saying is that the alternative route is not as crazy as most of you seem to think.
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Date: 31.01.2011
From: Realistic!

Subject: Re: Sulfasalazine OR Methotrexate?

Jeff, if you had RA as severe as most of us do then you would have no alternative but to take disease modifying drugs. You simply would not under any circumstances be able to live day to day crippled with pain and having to rely on people wiping your backside or combing your hair. You would have to take the medication to get any form of release from this disease. You also have to be aware that without these drugs the arthritis causes irreversible damage to bones which would end up making the person disabled. Years ago they could only give RA patients painkillers as no DMARDS were available at that time, they all ended up with bone damage and a lot of them disabled. RA is NOT CURABLE - it it was we would know about it. By all means try supplements etc to help you but believe me if you have RA you would know about it and you would try anything to lead a relatively normal life. For all the "horror" stories you say you have heard about there are also a lot of postive stories. Good luck with whatever you choose.
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Date: 31.01.2011
From: Jeff

Subject: Re: Sulfasalazine OR Methotrexate?

I agree that once the pain becomes intolerable you might be forced to take drugs. Though without coming off the drugs temporalily and trying a non-drug method you would not know if the non-drug method worked or not. If it did then that is good, if not then you could always go back on the drugs. All I'm saying is give it a try.

There is no proof that RA is not curable--they said that about scurvy too. If you do an internet search for "reverse rheumatoid arthritis" you will be amazed at the good news you will find.

Remember it is in the interests of the pharmecutical industry to convince you that there is no hope. That's how they frighten you into giving them business. See the following article about this. Please read it before responding to this post.

"Pharmaceutical fraud: How Big Pharma's marketing and profits come before consumer safety and wellness"

http://www.naturalnews.com/020345.html
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Date: 31.01.2011
From: sandra lowe

Subject: Re: Sulfasalazine OR Methotrexate?

well if your bloods come back and it is arthritis and then get into the REAL pain and i mean real pain then you will know what im saying. you see i refused for along time to go on these drugs (hate taking painkillers for a headache) tried all the natural methods, eating plans, you name it i have the t shirt. now im left with bending in fingers and toes that have come out of the joints!! so im afraid i get very annoyed when people come on and preach about other methods for something you know nothing about!
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Date: 02.02.2011
From: Jeff

Subject: Re: Sulfasalazine OR Methotrexate?

I'm expecting real pain to come. I suppose we just have a different philosophy about the nature of illness and how to cure it.
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Date: 02.02.2011
From: mags

Subject: Re: Sulfasalazine OR Methotrexate?

I have been on sulphazaline for many years now and it has calmed my ra down I have no problems with it but some of my friends that are methotrexate have lots of restrictions.
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Date: 05.02.2011
From: Angela

Subject: Re: Sulfasalazine OR Methotrexate?

Jeff,I was diagnosed with RA in 2008. The rhummy straight way wanted me to start on sulfasalizine and MTX, but I wouldn't even though I was in great pain, and could barely walk.
For the following 6 months I cleansed my body everyway I knew how. I researched natural medicines and herbs and had a strict regime of crystal form msm,magnesium, vit c, blackstrap mollases, cidervinegar, honey, meadow sweet tea,and used tumeric, and cinnimon in my food.
I also tried caledrex which was supposed to help RA.
As time went on my discomfort eased, and I thought I felt better in myself.Everyone that saw me said I looked well to, although every blood test I had which was fortnightly at the time because my esr and crp were so high, was climbing and climbing and no change I was still aneamic.
When my crp reached 82 and esr 103, I decided it was time to give in because I knew while they were so high my body was in distruct mode and I was not winning the fight internally anyway plus I still couldn't walk.
I started sulfa first, and nothing at all happened my esr and crp stayed sky high. After six months and no change, I was given mtx to take combined.
I decided that I would only take one lot, so weaned off sulfa and carried on with the mtx taking just six little tablets per week.
Within 3 months and no side effects,my esr and crp has dropped to near normal, I can walk much better and have no aneamia.The mtx had worked quickly and effectively.
My next step is to give my body time to settle more.I constantly monitor my ALT and ALK (liver function)and if there is the slightest raise above what it should be I lower my dosage of mtx and dont have any problems.
Once I have a full year of normal ESR and CRP tests I will stop the mtx, and go back to natural alternatives.
Looking back I think trying natural was a positive move, and taking the MTX was also a positive move.
So I do understand your philosophy as I have practiced what you are preaching so to speak.
I just hope first that you dont suffer like some on here or myself for that matter its not been an easy ride, and if it does come to it, I hope you remember to watch your blood because its the inflammation in my eyes thats the real danger whether taking meds or not.
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Date: 06.04.2011
From: James

Subject: Re: Sulfasalazine OR Methotrexate?

Has anyone been on Gold injections before? Was doing well on Gold for 28 yrs but the manufacturer Sanofi closed UK factory and moved production to Italy and I'm having probs with the Italian made Gold as its not as effective and seem diluted. I'm trying Gold and MTX combination. Has anyone had that combo? or is it better to try Sulfasalazine and Gold ? Also, I'm trying to find a good Rheumatologist Consultant in London or Sussex, any suggestions ? Pls, any suggestions would be great.
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Date: 06.04.2011
From: Jonny

Subject: Re: Sulfasalazine OR Methotrexate?

- JEFF - Your views/opinions do matter - however - I pray to the good lord that you don't have RA - If you do - come back to this site in a years time and give us an update. For now, plz let us be. You, like most others who do not suffer do not & cannot for one second understand the constant pain both physically and mentally. I feel your optimism, but when you have tried so many different treatments for so many years without any real success - life does become truly difficult. We are not asking for sympathy or help - we just want to share our stories and take comfort in each other. I hope all who read this agree. Keep up the battle gang!
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Date: 17.04.2011
From: amanda

Subject: Re: Sulfasalazine OR Methotrexate?

I have been on sulfasalazine for 9 months, i have seronegative spondylarthritis, my bloods are done 3 monthly now, but my last test said i had a slighlty low white cell count, i am getting a bit worried that the tablets are starting to affect me in the wrong way? going to the doctors this week for another test, has anyone else had this?
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Date: 17.04.2011
From: nicola

Subject: Re: Sulfasalazine OR Methotrexate?

Hi, i had to reduce my dose of sulphasalazine after it did the same to my bloods. the really annoying thing is that i was doing really well and starting to feel a real improvement in my symptoms when i was taking 6 a day but had to come off it for a week then go down to 4 tabs a day. i certainly wasnt feeling the affect of low white cells. i think that most of the drugs for RA do affect our blood or liver or kidneys to some degree but the regular blood tests are there to make sure it never gets too bad. ive been having weekly bloods for the last 12 weeks and its been a giant pain in the ar*e, but hopefully after tomorrow its going to be monthly. woohoo
good luck
nic x
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Date: 19.04.2011
From: Caz

Subject: Re: Sulfasalazine OR Methotrexate?

Hi,
Does anyone have experience with coming off sulphasalazine then going back on it? I was originally put on sulphsalazine for psoriatic arthritis when first diagnosed 10 years ago. I later stopped taking it as I felt a lot better, symptoms came back & the doc put me back on it, but the sulphasalazine didn't work as well as before - the rheumatologist said that this is common - if you come off sulpasal then go back on it just isn't as effective. Been on methotrexate for 5 years but had to reduce the dose as side effects not so good on higher dose - & lower dose not controlling symptoms. Rheumy has said I can go back on sulphasalazine if I want - but I wonder will it be effective now? Has anyone else any experience with this? Does 5 years off fool the body into thinking it's not had sulpa sal before? Coping at the moment on industrial quantities of ibuprofen so would appreciate any advice
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Date: 19.04.2011
From: Lee, York UK

Subject: Re: Sulfasalazine OR Methotrexate?

Ive been on Sulfasalazine since about September and im not sure the dosage is right yet and doesnt help the specialist giving me cortezone injections that dont work.

My last appointment he did it again and didnt even consider putting my dosage up from 2 in the morn and 2 at night.

However the Dr had to put me on Tramadol which is I believe is one step away from Morphine & Naproxen and is doing wonders for the pain, however even after taking it for 2 weeks I missed a dose for 48 hrs and I had sever withdrawel symptons (wont be doing that again).

My concern is if I need to raise my sulfasalazine is that might have to reduce my Tramadol which will make me sick and unable to work.

The other side is the specialist keeps me on the same dosage and keeps me taking the tramadol which I dont think is the best option.

What are peoples views on dosage of sulfasalazine and is increasing a solution for "burning" wrists which the dr says is nerve related (hence the tram)

I didnt go for Methotrexate as wanted to drink, however a dr friend of mine says his brother is on methotrexate and drinks.

Is there a big difference in the 2? Is one better than the other.

I currently have blood tests ever month which is a pain but not convinced the drug is working unless its one of those to think how bad I would be without it.
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Date: 20.04.2011
From: nicola

Subject: Re: Sulfasalazine OR Methotrexate?

hi, i was on the higher dose of sulph (6 a day) and it was starting to make a noticable difference til i had to stop taking it as my white cells dropped, though it did take months for me to notice it having an effect.
I started meth in january.... veeeery reluctantly as i too did not want to sacrifice my wine habit, i've been lucky and had hardly any side effects, and have been able to enjoy a few glasses of wine a week (sometimes a lot more)without it having any effect on my bloods. Its a pain in the backend having weekly bloods for the first 12 weeks but i'm on week 13, i think i'm noticing an improvement.
According to the guidelines, the ideal concoction for best results is to be on meth and sulph. I take 15mg meth, 2mg sulphasalazine, hydroxychloroquine and diclofenac for pain. I'm still on 5mg of prednisolone but gonna start weaning off that this week.
When i was first diagnosed, i was having horrific burning pain in my wrist, i was double dosing ibuprofen and paracetamol twice during the night and was seriously considering sawing my own arm off for a bit of relief!! the only thing that sorted me out was prednisolone, i was 80% better within sbout 3 days. i'd had a steroid injection in my butt which did nothing and i tried loads of different painkillers before i found what worked best (naproxen did nowt) - i take a long acting anti-inflamm called Volsaid retard and if i'm having a particularly sore day i take co-dydramol aswell.
i do feel like a junkie sometimes but i can now run up the stairs, and tie my shoelaces and empty the bin by myself.... none of which i could do this time last year.

Its taken a lot longer than i originaly thought it would to get to this stage, but none of the drugs have been as bad as i thought and thank god i can still enjoy a wee shandy now and again!

Good luck with whatever you decide
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Date: 01.06.2011
From: denise

Subject: Re: Sulfasalazine OR Methotrexate?

I have been on sulfasalazine for 12 weeks just had another blood test and it shows stage 1-2 kidney disease.Im absolutely devastated.I dont know yet if med's caused it or i was going to get this anyway.Waiting for a phone call from my doctor as i write now
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Date: 01.06.2011
From: marlene

Subject: Re: Sulfasalazine OR Methotrexate?

Denise, sorry to hear about your blood test reslts.Hopping your DRs phone call will be positive for you. I am sending all my love to you, take good care. X
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Date: 01.06.2011
From: denise

Subject: Re: Sulfasalazine OR Methotrexate?

Hi Marlene,
Thanks for your reply.I can't believe this is happening.I have had pain in the right kidney area for a while been to hospital for ct, but they found nothing.I was still put on this medication.As far as i know my tests were fine 3 weeks ago,although not sure they done kidney function test.All i can do now is wait for my gp to phone today.Im told that wont be till around 1 oclock.It is awful,the waiting.My son knows something is wrong as well.
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Date: 01.06.2011
From: Patricia

Subject: Re: Sulfasalazine OR Methotrexate?

Oh I am so sorry to hear your news too Denise. Unfortunately with our RA we have no option at the beginning to take the drugs even though they do have side effects.

I do hope the news is more positive than you anticipate.

Will be thinking about you at one oclock and hope that all will be well.

Please let us know what happens...x
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Date: 01.06.2011
From: denise

Subject: Re: Sulfasalazine OR Methotrexate?

Hi Patricia,
Thank you for support x
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Date: 02.06.2011
From: Patricia

Subject: Re: Sulfasalazine OR Methotrexate?

How are things today Denise?...x
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Date: 25.07.2011
From: Jackie

Subject: Re: Sulfasalazine OR Methotrexate?

Hi. I have been in sulphasalazine for 2 + yrs now. It has worked fine for me with just a few issues with my bloods to start with but this sorted it self out. I had no side effects worth mentioning so I was lucky.
Unfortunately they have now stopped working and I have been put on mtx.
I am a little worried about these tablets because of all the reported side effects in particular some sites have mentioned memory problems, speech problems, and infertility.
Does anyone have any experience they can share about these tablets, as I am seriously considering stopping them.
I should mention that although I tend to get all of the pains associated with RA I don't get a lot of swelling except in my hands occasionally, so luckily joint damage is not a big risk at the moment.
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Date: 31.07.2011
From: Babs

Subject: Re: Sulfasalazine OR Methotrexate?

In May 2010 went to the rheumatologist with suspected R.A. Special blood tests carried out he did not confirm R.A. as kept coming and going ( possibility of an immune system flare up). Steriods prescribed. Took between 5mg and 20 mg depending on the pain flare ups no side effects and no tiredness. Sometimes could go weeks without any. However now fully diagnosed (May 2011) R.A.and am on MTX and Folic Acid. Dose of MTX building now on 17.5mg once a week. Feel fluy and constantly tired. They say that it will take time to find my correct dose( been taking increasing dose for 9 weeks- blood tests fine and since stopped steroids white cell count increasing back to normal)Can anyone tell me their experience at the start of treatment- does it mirror mine, as still in some pain although no where near where it was prior to steroids?
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Date: 02.08.2011
From: Dalton

Subject: Re: Sulfasalazine OR Methotrexate?

Hi, Ive been taking 20mg of methotrexate and 4 sulphasalazine a day for 2 years and have hardly any problems. It took about 4 months to get used to the medication as I felt really"off" for a while, sickly and headache etc but it is worth sticking with it - as I say it took 4 months roughly before it all worked and my body got used to it but I live a relatively normal life now.
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Date: 19.08.2011
From: Sue Mitchell

Subject: Re: Sulfasalazine OR Methotrexate?

i totally agree with Christine I have being diasgnosed of early stage of RA and its so very apinful in my feet and ankles.

Just need to find a drug that i can manage the pain instead of mild medication, i need a stronger one.
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Date: 23.10.2011
From: rhona

Subject: Re: Sulfasalazine OR Methotrexate?

hi, i started on sulfasalazine and it worked well for about 4 years then my knees got bad and i was put on methotrexate, i didn't feel any improvement with the added methotrexate after being on it six months i was in severe pain and then i was put on hydoxychloquine which really made a difference, i am still on all 3 medications and i have had R/A for over 10 years but i dont think the methotexate makes any difference, i am now in agony as i think they have all stopped working, i phoned the rheumy dept in tears as they said they can't give me an earlier appointment, i have had 3 steroid jags over the last two months and my feet are so sore i can barely walk, i also take 600mg lodine but it's not very helpful, i feel its unfair to wait another 2 months to see a consultant when i am in so much pain. Good luck to all of you suffering from this painful disease.
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Date: 24.10.2011
From: bsk

Subject: Re: Sulfasalazine OR Methotrexate?

Take yourself to A&E, that's my advice. They will have to see you then.
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Date: 24.10.2011
From: rhona

Subject: Re: Sulfasalazine OR Methotrexate?

Thanks for your reply, i went into the hospital on friday and was given an all over steroid injection and was told it would keep me going for 2 months until my appointment in December but i really don't feel any benefit from it. I don't know whether to phone again and ask for another injection.
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Date: 11.12.2011
From: Janet

Subject: Re: Sulfasalazine OR Methotrexate?

First of all I want to say that everyone reacts differently even in families.
That said I have RA also, diagnosed 1996, then in a matter of 2 months it was in every joint in my body! Methotrexate was one of the first med.'s tried on me. I had a bad reaction. So I was changed to sulphersalazine. I was happy with this regimen along with other oral then injectables & infusions. I was on 600mg daily. I am managed with the Humira & sulphasalazine & voltaren. I was reduced to 200mg daily, the cast iron stomach I once had, is gone. The last few months my stomach problems have become quite problematic. So we (Doc & I) have stopped this medication for now. I am still in the 6 week wait and see period.
Remember, YOU are your best advocate! Research, research, research. We live in the time of technology and info is out there unfortunately both good and bad. Another reason to research, to be sure you have all the right facts. Any good doctor will tell you to research and they will be impressed that you did so. It is after all YOUR body!
Sometimes I am long winded! :)
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Date: 11.12.2011
From: Janet

Subject: Re: Sulfasalazine OR Methotrexate?

Addendum, I was born in the UK but live in California, US I came here for my health. I was in a wheel chair I no longer am, unless there is a lot of walking (over 1 mile)
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Date: 28.11.2012
From: adele

Subject: Re: Sulfasalazine OR Methotrexate?

hi all i was diagnosed with arthritis when i was 15(now 21). i have been on meth a few times as i was always forgetting to take them, with it being 8 tablets once a week. a few years went by with me suffering and forgetting. i then decided to have a baby while i was still a little mobile, i had a baby girl last December. while pregnant it was the best as i had no pain, that lasted until april. the arthritis came back as quick and painful as ever and now i have been back to the hospital and i am either going on Sulphasalazine or muscular methyl-prednisolone injections. so now its the waiting game for test results to see if its in my joints or in the muscles. thanks adele
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Date: 04.10.2013
From: Rob

Subject: Re: Sulfasalazine OR Methotrexate?

What a stupid comment to make.
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Date: 04.10.2013
From: Rob

Subject: Re: Sulfasalazine OR Methotrexate?

My post above was in response to Jeffs rather stupid comment about us being 'fatalistic'.
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Date: 04.10.2013
From: Rob

Subject: Re: Sulfasalazine OR Methotrexate?

I've been prescribed lefludomide, which was horrible. It didn't do me any good at all, and caused loss of feeling in fingers, drowsiness, balance problems and a dull pain in the right kidney area. Ultimately, I changed to MTX which was even worse. Add to the above an intense need to scratch an itch, to the point where I bled badly and obviously ran the risk of serious infection. Against medical advice, I stopped taking it (17.5mg once a week). The itching eased off, but didn't disappear altogether.
Next week, I go to see about starting on sulfa, which I will try for 6 months or so to see how it goes.
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Date: 25.06.2014
From: Carl

Subject: Re: Sulfasalazine OR Methotrexate?

Hi
I am currently at the last resort after trying everything, steroid infusion, Humira, Enbrel, Golilumab and pain killers ranging from coocodes and dihydrocodeine, diazapam and Naproxen. My only option now is MTX or Sulpha. My conditions include RA and AS (Ankylosing Spondylitis)
Reading some of your comments please don't think anti-TNF is the answer, yes it is possibly the most effective but I can guarentee it won't suit you all. I was on anti-TNF for 5 years using all 3 and my body eventualy created a resistance to all of them, costing the NHS time & money. The end result finishing with me having a multitude of tests with the possible outcome of lymphoma. Thankfully this has been ruled out but my blood counts are incredibly abnormal, CRP and ESR's reaching in excess of 150 average (once recorded at 243) considering normal is usually up to 15.
Anyway, I will be going on either MTX or Sulpha or possibly both so hopefully I can come back with some positive news.
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Date: 12.01.2015
From: John Eley

Subject: Re: Sulfasalazine OR Methotrexate?

Ok please do not listen to Jeff ..belter .. But obviously just not experienced the real pain of this condition and doesn't know any better,I still get people saying to me have you tried cod liver oil lol
I've been on sulphersalazine for 15 years now has worked great,came off due to stomache props .. Absolutely crippled now never had it in my knees and feet before do now! I so regret not pushing my reumy to get me on something else straight away demards are a lifeline lots of studies have shown the sooner you start the better they work ,unfortunately they are often only used after a year or 2 of pain
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Date: 22.01.2015
From: Sam

Subject: Re: Sulfasalazine OR Methotrexate?

I was diagnosed with RA just over a year ago and went straight on Sulphasalazine (chosen over methotrexate as I am a female of child-bearing age and they weren't keen to give it to me for that reason). I had no side affects and once it kicked in (they say it takes up to 12 weeks) I had no pain at all and almost forgot I had RA so worked really well for me (although I think mine is quite mild compared to what some people describe on here).
That was until a few months ago, the regular blood tests you have to have showed that my liver wasn't liking the medication and the liver function test result was creeping up every time so have had to stop sulpha and now waiting to see the consultant to decide what to do now! Such a shame because Sulpha was working brilliantly for me!
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Date: 23.01.2015
From: SleekFox

Subject: Re: Sulfasalazine OR Methotrexate?

This thread is over 4 years old! You might be better starting a new one.
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Date: 18.02.2015
From: alan

Subject: Re: Sulfasalazine OR Methotrexate?

I've just been diagnosed with RA (aged 72) and I've opted for sulfasalazine over methotrexate. I am on one tablet a day for a week and will increase the dose over three weeks till I'm on four a day. So far no side effects on my fifth day. When can I expect them, if I get them?
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Date: 18.02.2015
From: suz

Subject: Re: Sulfasalazine OR Methotrexate?

Its good to carry on with old threads as it will help someone with people's comments over the past years and give better understanding how everyone is coping.
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Date: 21.02.2015
From: Sally

Subject: Re: Sulfasalazine OR Methotrexate?

Yes I agree, it is good to carry on old threads as its like a diary you can refer to when needed. I find they contain a whole load of info from so many different people that they prove to be invaluable.
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Date: 21.02.2015
From: Trina - Moderator

Subject: Re: Sulfasalazine OR Methotrexate?

Hi everyone,

I've just removed some comments as they are getting personal and it's going to put people off using this forum if they think they may get unkind comments coming back.

Sorry if it seems heavy handed but this forum is meant to be a supportive and nice place to be!
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Date: 21.02.2015
From: Sally

Subject: Re: Sulfasalazine OR Methotrexate?

Thank you Trina !
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Date: 16.03.2015
From: Carol Gwatkin

Subject: Methotrexate side effects

I was put on methotrexate in january 2015 and build my dose up weekly to six x 2.5md tabs.
In february I started to feel ill, extremely tired, fluish, nausea and vomiting and loss of appetite. My dr has stopped the methotrexate as my liver readings were extremely high. I havent taken any now for 3 weeks but still feel really ill. Is this normal?
When should I expect to feel better?
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Date: 18.06.2015
From: Melissa

Subject: Re: Sulfasalazine OR Methotrexate?

Hi, I have been diagnosed with non sero inflammatory arthritis. I can't seem to find much about it but my treatment seems to be the same as RA. It took unnecessary surgery, 8 years, a wrong diagnosis of osteoarthritis before I finally got sorted thanks to my physio (and despite my GP).
I have been taking sulfasalazine since last october and had no problem with side effects after the first few weeks. It's not really helped with the inflammation though. My knees are like balloons so I am starting on methotrexate too this week.
I find it's always worse during my period and like adele said earlier I had no problems at all both times I was pregnant. I was wondering if anybody else had found the same? Had mentioned this to my rheumy and he said others have said that but they don't know why. I am wondering if going on the pill could help at all- anybody tried this?
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Date: 18.06.2015
From: Sean

Subject: Re: Sulfasalazine OR Methotrexate?

Hi Melissa

I am fairly well read on arthritis flare triggers - and immediately thought of the obvious hormonal link from your post.

There is a lot out there with research backing it up - so am surprised you doc says don't know.

The hormone Progesterone - falls a lot at the beginning of a menstrual cycle. I was aware from previous reading that low progesterone causes a lower regulatory immune response.

So when there is more progesterone we get a more regulated immune response to environmental triggers - see these links they explain it well

http://www.nature.com/nrrheum/journal/v10/n12/fig_tab/nrrheum.2014.144_F2.html

http://www.nature.com/nrrheum/journal/v10/n12/full/nrrheum.2014.144.html

http://www.womensinternational.com/connections/inflammation.html

The article above says - "too many carbohydrates causes overproduction of two hormones: pro-inflammatory eicosanoids and insulin. High levels of these hormones then cause the body to produce more cortisol (the stress hormone), which furthers inflammation."

http://www.purdue.edu/newsroom/releases/2013/Q3/researcher-finds-way-to-convert-blood-cells-into-autoimmune-disease-treatment.html

Above link is the article that originally sparked my interest!

Here is an excellent forum where they are discussing your issue in more detail - Danger, some doctors do not know the full effects of hormone replacement therapies - as this thread explains the body can convert some hormones in to bad stuff when other factors are out of whack .

http://www.raypeatforum.com/forum/viewtopic.php?t=826

Interesting about your earlier diagnosis too - as I am quite sure from the recent research that osteoarthritis (especially in younger people) will prove to be inflammatory - like RA but less detectable. In this article is compares Osteoarthritis with Alzheimer's - both being continuous low grade inflammation.

http://med.stanford.edu/news/all-news/2011/11/osteoarthritis-results-from-inflammatory-process-not-just-wear-and-tear-study-suggests.html

So the way I see it is that Huntington's Disease is to Alzheimer's - as RA is to Osteoarthritis.
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Date: 27.08.2015
From: Paul

Subject: Re: Sulfasalazine OR Methotrexate?

Been on Sulfasalazine for more than 10 years to treat sero- negative arthritis and it worked with few side effects until recently when the left knee swelled up and refuses to settle after two aspirations and one steroid injection. All very reminiscent of my original symptoms which affected knees, hips, ankle and both lumbar and cervical areas of spine. Before going onto Sulfasalazine I spent 18 years putting up with it with periods of flare-ups lasting many months interspersed with periods of remission. During prolonged flare-up I was having joint aspirations,steroid injections and NSAID's when things got really bad. Every joint that was affected now has reduced mobility. Not sure if it is connected but I have just had the right hip replaced at age 58. Am hoping that the additional stress caused by my arthritic right hip was what triggered the recent left knee flare up and it will maybe settle once I get used to the new hip. However, Rheumatologist increased my dose of Sulfasalazine 2 months ago from 4 to 6 tablets per day, although this has not as yet had any effect. I get the impression that he wants to give Sulfasalazine the best chance before going on to the more powerful (toxic?) Methotrexate, especially as I tolerate Sulfasalazine well. I realise that sero-negative arthritis has a better outlook than full blown RA, but nonetheless it has had a significant impact on my life, less so once controlled for the last 10 years by Sulfasalazine. Incidentally, my original diagnosis back in 1987 was ankylosing spondylitis, which I never really believed although my symptoms seemed to fit the disease. Subsequent spine x-rays, the latest just before my hip replacement 2 weeks ago, have ruled this out as I do not have the characteristic changes associated with ankylosing spondylitis, although there are degenerative changes which limit my ability to bend and turn my head. I sometimes wonder if I had started on DMARD earlier before joint damage set in whether I would be better off now. Certainly,the Sulfasalazine has improved things dramatically for the last 10 years and I have felt a lot more supple and mobile on it with no joint swelling and much less pain, although it is all relative compared to normal mobility.
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Date: 27.08.2015
From: lucy

Subject: Re: Sulfasalazine OR Methotrexate?

Hi Paul, If you find taking the 6 sulphasalazine don't make any difference after another wee while I would consider taking something else to help. I also take sulphasalazine and have done so for around 15 years now. I also take Plaquenil (hydroxychloroquine) and it is meant to be one of the safer drugs. You could ask to try them if you are not keen on the methotrexate. I also believe stress does play a part in the symtoms, hard to avoid stress but sometimes the joints can settle down a bit when things are more relaxed.
Hope you feel better soon.
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Date: 29.08.2015
From: Paul

Subject: Re: Sulfasalazine OR Methotrexate?

Hi Lucy. That's encouraging and I will discuss with my Rheumatologist when I next see him in 6 weeks. My new right hip is doing well after 3 weeks and actually it is the swollen left knee joint which is hampering me most at the moment. Once this is back under control I should be back to a much more active lifestyle.
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Date: 30.08.2015
From: lucy

Subject: Re: Sulfasalazine OR Methotrexate?

That's great, Paul, 3 weeks isn't a long time. I had a fall back in February and broke my femur so they gave me a half hip replacement, I'm 61 and I'm just getting back to normal. I think I would have been better getting a full hip replacement as I was left with a difference in leg length but as it happened in Dubai I had no choice in the matter.

Sometimes a support on the knee can help or even an ice bag to reduce the swelling.
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Date: 29.09.2015
From: frazer

Subject: Re: Sulfasalazine OR Methotrexate?

Hello all ..Ive been diagnosed with RA
And have started sulfazine 4 weeks ago
Am now taking 500mg 4 daily
Also in the 4th week I have noticed Iam itching
All the time .to the point of madness cannot concentrate
Am very irritable plus now have a big rash on my arms aswell.It says that this should subside as I get used to the sulfazine
But to be honest I wasn't prepared for this. God help me if progresses any worse
My gp has me on morphine and naproxen plus amitriptyline
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Date: 29.09.2015
From: lucy

Subject: Re: Sulfasalazine OR Methotrexate?

Hi Fraser, It might be an idea to reduce the sulpha. to 3 again for a week or so and see if the itch settles any. I would also look to see if the sulpha. and the other meds you are on are suitable together, although I guess this has been checked out. If this doesn't help I would speak to the rheumy team about this. Good luck
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Date: 20.02.2016
From: julie

Subject: Re: Sulfasalazine OR Methotrexate?

Hi, I'm female 51yrs. Was diagnosed with RA 8 yrs ago and started on Sulphasalazine (5 x 500mgs daily). The first 6 yrs of my RA weren't too troublesome and the painful days could be helped by taking ibruprofen/paracetamol. However things have got so much worse in last 18months. I seem to have constant bad flare-ups (can hardly walk down stairs a lot of the time). I was started on methotrexate 15mgs weekly (along with the Sulpha) 8 months ago but there's no difference whatsoever. I've had 4 steroid injection in that time - which worked wonders - but only last for approx. 1 month each. My rheummy is now talking about starting me on Embrel injections. Don't like the thought of injecting myself nor the various side affects that Embrel can bring, but I know I can't go on in this constant pain/loss of mobility. Can anyone give me any real positive stories of Embrel working wonders for them?
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Date: 23.02.2016
From: Shae

Subject: Re: Sulfasalazine OR Methotrexate?

Hi, I am 41 and was diagnosed 4 years ago. I'm really nervous about medications and have been on plaquenil for the past 4 years. My left elbow has now "locked" and will not straighten. I think I have been trying to "hide" my pain but somedays I can barely wash my hair (right shoulder). I am a dental hygienist and have cut back to only one day of hygiene per week and am now doing reception the rest (major pay deduction...) Yesterday i had a cortisone injection in my elbow after being on prednisone for 2 weeks. Not sure what to do next......suggestion from my rheumatologist is methotrexate or sulfasalazine. I feel lost. She brought up lymphoma as side effects of both medications and said we RA people are more susceptible to it also even without medication. I am really happy to have found this forum. Any advice would be great.
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Date: 23.02.2016
From: lucy

Subject: Re: Sulfasalazine OR Methotrexate?

Hi Shae, I've had RA for around 15 years now and like yourself I was worried about going onto the medication but RA can be a horrible disease and the idea of the drugs is to prevent or at least slow down the damage that it can cause. I don't like having to take drugs either but I would rather take them than be the way I was before I went onto them. I started on sulphasalazine and was on them alone for around 4 years then they introduced methotrexate and then plaquenil. I still take all three drugs, I'm not keen on the MTX but as I'm also on a biologic drug called rituximab they say it works better with MTX. Most drugs have side effects but we have to weigh it all up and I have been in so much pain with RA in the past that I was willing to try anything and now I feel a lot better since going onto the biologic drug. I think you should follow the advice of the rheumatologist. Some people feel that diet can make a difference so it may be possible diet could help but I really would give the sulphasalazine a try. Good luck in whatever you decide x
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Date: 24.02.2016
From: Shae

Subject: Re: Sulfasalazine OR Methotrexate?

Thanks Lucy. I know I need to do something. I am just super scared. I really appreciate you responding to my message. She has given me a week to decide. Some days I feel like I am ok. Then I get a flare up. Today I feel pretty good, so it makes me take a step back and say, "maybe I don't need these harsh drugs yet". So frustrating. The biologics like Humera and Remicade are not covered medications in Canada. They only start with Sulphasalazine and methotrexate. I am already on plaquenil. I am seeing a naturopath in March.
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Date: 24.02.2016
From: lucy

Subject: Re: Sulfasalazine OR Methotrexate?

Hi Shae, I didn't realise you were in Canada. They tend to start with sulphasalazine here too, and they often use the three drugs together, mtx, sulpha and plaquenil. They do say plaquenil is one of the less toxic drugs. Do you get your eyes checked every year with being on them? Good luck at the naturopath and do let us know how you get on. x
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Date: 25.02.2016
From: Shae

Subject: Re: Sulfasalazine OR Methotrexate?

Hi Lucy. I was on prenisone for 2 weeks to try to get my elbow back to normal and I felt great! Then I just had cortisone on my elbow and it is straight again and I still feel good! I am sleeping and I have zero pain right now. Could the elbow be just a gym injury (it really flared up after i was doing lots of weights) and maybe is better now. I am bucking the medication as much as I can, so you can see. Again, I feel good right now - maybe the prednisone cleared up some inflammation and is staying in my system? I am happy to hear you are doing well on your medication. What is your biggest side effect, if any?
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Date: 26.02.2016
From: lucy

Subject: Re: Sulfasalazine OR Methotrexate?

Hi Shae, That's good that the cortisone has helped your elbow, I've had many steroid injections and they are usually very effective as they are excellent for inflammation. I hope it has been a gym injury that's caused the problem, it may well be. If the pain returns after a while then you will know it's the arthritis.

I've been quite fortunate that I've been able to tolerate the medicines that I've been on and haven't really had any bad side effects (so far)
Take care x.
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Date: 07.03.2016
From: Sara

Subject: Re: Sulfasalazine OR Methotrexate?

I was diagnosed with RA four months ago and been on sulfasalazine for three months with no side effects. My CRP has always been less than one prior to diagnosis and now and luckily i've not had too much pain at all. That was until this weekend when I guess I had my first bad flare up, burning pain in many joints for about two hours at night and increased stiffness the next day but OK now. Do you think the sulfasalazinr isn't working or should I give it longer? Any thoughts? Not due to go back to rheumy nurse for 5weeks. Thanks sara
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Date: 07.03.2016
From: lucy

Subject: Re: Sulfasalazine OR Methotrexate?

Hi Sara, I think it will be working but sometimes we have to take other drugs alongside it if the symptoms worsen. I've been on sulphasalazine for around fifteen years now but take other drugs with it. It worked quite well on it's own for me for about 4 years. You've not got too long until your appointment so you can discuss it with them. x
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Date: 08.03.2016
From: Sara

Subject: Re: Sulfasalazine OR Methotrexate?

Thanks Lucy, what else do you take? I think the flarecup scaredvme and madevme realise I have been quite lucky so far.how do they decide if it's not working enough?
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Date: 08.03.2016
From: Shaelyn

Subject: Re: Sulfasalazine OR Methotrexate?

Sara, hoping the med works for you. I hear that combinations of drugs is what many people do. Once I decide on sulfa or metho, i would still be on plaquenel along with it . I am seeing a naturopath thursday.....has anyone tried changing diet ? I feel like i am too far gone for that but i will still attend the appointment. Also, does anyone get constant "cracking " in their joints? my right shoulder and elbows chronically crack....i wonder if that is something else I have not been diagnosed for ? ugh!! Hope everyone is feeling good today. :)
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Date: 08.03.2016
From: wayne

Subject: Re: Sulfasalazine OR Methotrexate?

I have been taking MTX for a year or so but have not coped well with side affects so will be trying sulf hopefully in the next few weeks after my next hospital appt. Can anybody on Sulf confirm if the monthly blood tests are still needed (for liver function etc). I have a bit of a phobia when it comes to injections so wonder if there is any other way to check liver function other than by taking blood?
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Date: 08.03.2016
From: lois

Subject: Re: Sulfasalazine OR Methotrexate?

I think liver function is always tested by bloods. Sorry you have a phobia with needles must be awful. I hope some one else might make a suggestion or know different. Good Luck with it all.
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Date: 08.03.2016
From: wayne

Subject: Re: Sulfasalazine OR Methotrexate?

Thanks. Yes, every month it is a nightmare which is made worse by the fact that my local surgery always seems to be running late by half an hour or more, which gives me more time to think about what is about to happen. Of course the more tense you are the more difficult it is to draw blood which makes for a more painful and drawn out experience, only making my next visit even more dreaded (and so on)... I thought that after a few visits that my phobia would subside but if anything it has only gotten worse.
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Date: 08.03.2016
From: Sara stephens

Subject: Re: Sulfasalazine OR Methotrexate?

Hi Wayne, when I started on sulfasalazinr it was blood tests every week for the first month as you build up to full dose, then onto monthly for 3 months or so and then if all OK I was told it would be every 3 months. You do endvup like a pin cushion. Not sure if there are techniques you can use to reduce fear and anxiety?
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Date: 08.03.2016
From: sara

Subject: Re: Sulfasalazine OR Methotrexate?

Hi Shaelyn, I get a lot of cracking and creaking in my joints. I try to eat healthily if I can and have started taking milled flax seed on my cereal each day and trying tumeric/curcumin capsules.both are meant to be anti inflammatory.
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Date: 08.03.2016
From: lucy

Subject: Re: Sulfasalazine OR Methotrexate?

Hi Wayne, I think every three months is acceptable for blood tests if you are on sulpha especially if you have been on it a while and your previous tests are stable.
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Date: 09.03.2016
From: Shaelyn

Subject: Re: Sulfasalazine OR Methotrexate?

I still have not taken my sulf or meth as i have not decided yet.

Sara, My right shoulder is cracking almost at every move and the pain wakes me up at night...i sound crazy but does this mean i need to start taking something soon? :( I am terrified. The lymphoma side effect is scaring the pants off me. Does anyone have jaw arthritis?

Wayne, that is so hard if you have anxiety for needles. I don't like them but I can tolerate. Weekly though, I am not so sure. I am a hygienist and see people very nervous daily for needles. Some will take ativan....however to have to take "another" medication as often as getting the blood work would be hard too. I take it before flying and it helps lots with no side effects for me.
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Date: 09.03.2016
From: wayne

Subject: Re: Sulfasalazine OR Methotrexate?

I will look into ativin, but I am already on 4 different tablets (I am prescribed others for pain relief which I deem none essential) and as I am unable to work and the government do not seem to think that I am eligible for any benefits I do not know how I could warrant the cost.
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Date: 13.03.2016
From: Shae

Subject: Re: Sulfasalazine OR Methotrexate?

Has anyone tried medicinal marajuana? it is not legal where i live for everyone and meeds a prescription. many doctors do not prescribe it. My issue is I can't sleep at night due to my shoulders aching in the night. ?? I'm starting to think I need to start some methotrexate....
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Date: 15.03.2016
From: David

Subject: Re: Sulfasalazine OR Methotrexate?

I started Sulfa about 8 weeks ago now but don't really feel the difference. I still ache like mad in my neck, shoulders and spine and I don't get much restful sleep. I also feel very distant most of the time and work is becoming a problem. My interaction with work colleagues has suffered and I do feel a little depressed and very tired most of the time. I missed my tablets this morning and feel strangely better in myself. Has anyone experienced this? I'm going to call the Rheumy nurse tomorrow, about trying something else, although I know it can take longer than 8 weeks for the Sulfa to kick in.
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Date: 15.03.2016
From: lois

Subject: Re: Sulfasalazine OR Methotrexate?

Hi David, you are doing the correct thing always let your rheumy nurse know if you feel things are not right with your meds. Only you know how you feel and your nurse will confirm if your meds need changing.
Tiredness is all part and parcel of this disease unfortunately. Do you have any pain medication?

I hope you get some answers soon. Good luck with it all.
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Date: 21.03.2016
From: Alan

Subject: Re: Sulfasalazine OR Methotrexate?

I began on sulfasalazine but had a nasty skin reaction.

I've now been on methotrexate for 13 weeks with no side effects though I can't say I feel a lot better - still stiff and a painfully slow walker!

Can any long-term methotrexate takers let me know if it might get better after 13 weeks?
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Date: 23.03.2016
From: Sharon

Subject: Re: Sulfasalazine OR Methotrexate?

I've been on sulphasalazine for 13 years. I'm on 4 a day plus Naproxen if needed. I've gone from being almost crippled with pain to leading an almost normal life. My knee joints are the worst and hurt all the time and my feet have given me problems so have had insoles made to support my feet and ankles. But I've not had a flare up for 10 years. I know my limits regarding exersice. I walk my 2 dogs daily and go to Zumba class once a week. I have a pretty active job but I do have understanding and supportive colleagues who help me out when I'm having a bad day. I would love to be totally pain free but I don't think that will ever happen. But while I can use it I will!!
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Date: 20.04.2016
From: Robert

Subject: Re: Sulfasalazine OR Methotrexate?

I was diagnosed with AS 6 years ago, Im a 40 year old male.

I was put on Prednisolone and Orudis Retard to begin with. That didn't agree with me so I had to stop. Then I was put on Sulfasalazine in 2011-2012 (I am now on 2x500 mg pills twice daily).

Before all this I had to roll out of bed in the morning, my wife had to fetch me painkillers in the middle of the night as I was wimpering in my sleep from neck, knee, shoulder and back pain. I couldn't sit for extended periods of time due to the fact that I wouldn't be able to get up from the pain in my knees and feet. You all now the story.

Late in 2012 I took up playing rugby again. I felt great. No pain...nothing! Felt like I was 25 again.

Last week I had to stop taking the Sulfasalazine as my white blood cell count was really low. I can feel my neck stiffening up again, my knees swelling.

I just hope it's temporary and that I can go back on the Sulfasalazine soon.
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Date: 20.04.2016
From: lois

Subject: Re: Sulfasalazine OR Methotrexate?

Hi Robert, sorry to hear you have had to stop your meds. I take Sulfasalazine and I have no side effects so far. I take 3x500mg twice a day.

Try some heat pads or a good old fashioned hot water bottle on that neck.

I hope you can either be back on your meds or something different very soon and you can resume your Rugby again pain free.

Good luck with it all. Please come back and let us know how you are doing. xx
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Date: 20.04.2016
From: sleek fox

Subject: Re: Sulfasalazine OR Methotrexate?

It's disappointing when you have to stop your meds but, hopefully, they will let you restart when your blood count goes up. Are you on any anti inflammatory drugs in the meantime or can they give you a steroid injection to tide you over?
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Date: 24.04.2016
From: Ian3900

Subject: Re: Sulfasalazine OR Methotrexate?

Am 52, just been diagnosed with Psoriatic Arthritis. Negligible psoriasis through life and few sore toes and a sore finger. Told to take Sulfasalazine by Rheumy. Terrified of the idea of the expected side effects which feel totally out of proportions to symptoms and going straight from full health and no contact to medics to pill dependency and regular blood tests. Hate the idea of reducing my body's immunity and this orange urine business is just plain disgusting. Oh and I like the sun. Can't take Mtx as like the odd glass of wine. Very depressing, feels like a life sentence.
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Date: 24.04.2016
From: lucy

Subject: Re: Sulfasalazine OR Methotrexate?

Hi Ian, I've been on sulphasalasine for over 15 years now and I can honestly say I've not had any problems with them. I don't like the orange urine either but it's harmless and no one really sees it except the nurse when you take it to be tested and I always put a paper tissue round the bottle. As for the glass of wine, I enjoy a glass of prosecco or three on a regular basis and it has never caused any problems (touch wood). You do need blood tests more often at the beginning but if everything is normal you can reduce it to 3 monthly. I am very pale skinned so have always have had a problem with the sun, but if you wear a high factor cream then it's fine to go out in the sun, I do anyway when I see it. It isn't really as bad as it sounds. I very seldom took a pill before having RA so I know how you feel but it's better than suffering. Some people do find that diet helps their condition. Try not to let it get to you, I did in the beginning and I think it made my condition worse, it's best just to try and accept you have a condition and don't let it take over your life.
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Date: 24.04.2016
From: Ian3900

Subject: Re: Sulfasalazine OR Methotrexate?

Thanks Lucy getting to me is precisely what is happening. Not sleeping been off work on counselling and thinking of not taking the pills. This orange thing is a big thing disgusting and filthy. Incidentally do you have to have urine tests as well
or something?
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Date: 25.04.2016
From: lucy

Subject: Re: Sulfasalazine OR Methotrexate?

Sorry to hear that it's upsetting you so much, Ian. You do take a urine sample with you when you get your blood checked and the nurse will check that too. There are other pills that can cause the same colour change in urine (some antibiotics) but I no longer think it's a big deal. If you really feel it's causing you such distress then speak to the rheumatology nurse and see if they will prescribe something else. I still remember looking for ages at the first pill before I could swallow it but it really wasn't too bad. If your are not in too much pain perhaps you could try diet change to start with and see if it helps but stressing will make your condition worse so it's important you can relax as much as possible.
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Date: 25.04.2016
From: Ian3900

Subject: Re: Sulfasalazine OR Methotrexate?

Thanks Lucy I don't think that there is much choice only alternative is mtx which can't do as I drink. Whilst not adverse to giving up now is not the time in fact am drinking like a fish with stress. Have heard orange colouring can wreck clothing do you get that? Guess what having yet another sleep free night another day off work coming up.
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Date: 25.04.2016
From: Shae

Subject: Re: Sulfasalazine OR Methotrexate?

Ian, I feel the same way. I have been wavering about taking the pills too. My shoulder is so sore, it wakes me in the night. I am super scared about taking them - just all the side effects. I see my physician and rheumy in two days to figure all this out. I am sort of in denial too but so scared I could lose a joint or two. I'm 41 and I have been on plaquenil for 5 years. I completely understand how you are feeling, as I feel exactly the same.....life sentence, life changing, etc. Trying to be positive but it is sometimes so very hard.
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Date: 25.04.2016
From: lucy

Subject: Re: Sulfasalazine OR Methotrexate?

Plaquenil (hydroxychloroquine) is meant to be one of the safer drugs with less side effects so you could ask for that. It is quite scary having to take drugs but I find the alternative is worse and there are side effects with every drug even the ones you buy over the counter but it doesn't mean that you will necessarily get them. I've never had a problem the sulpha staining my clothes. The alcohol can cause side effects too, Ian, so I try not to worry too much about it all. I know it isn't a nice thought taking drugs and having a disease but life can be a bitch at times, but we have to try and cope the best we can and make the most of it. Good luck with whatever you decide.
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Date: 25.04.2016
From: ian3900

Subject: Re: Sulfasalazine OR Methotrexate?

Many thanks Shae and Lucy it is really comforting to know that people have the same problems. I am in no way suggesting that this is what you or others should do but I have decided, after talking to near and dear, to exit the situation and reconsider medication at the end of summer. I am a summer lover and winter hater, this is just bad timing and at the end of the summer I might be in a better place to face up taking the meds and sticking to them. Hopefully the delay won't cause too much damage.

All that the prospect of life long medication is doing at the moment is pulling me closer to depression and a breakdown and there is no point in that.

Thank you again for your help, and I wish you well with your situations, and Shae, your consultation in two days time.
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Date: 25.04.2016
From: Kathryn

Subject: Re: Sulfasalazine OR Methotrexate?

I was diagnosed with psoriatic arthritis about a year ago. I am taking sulfasalazine at the moment but have a review next month to discuss changing to methotrexate as they don't think the sulfa is working. At first it was just in my fingers but now affects both my wrists. I couldn't drive this morning as the pain was so bad. Not sure what to do about the possible change in meds as I really don't want to go on methotrexate - not sure I have much choice however as the pain gets so bad.
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Date: 25.04.2016
From: ian3900

Subject: Re: Sulfasalazine OR Methotrexate?

One of the things I have found so frustrating is that they refuse to tell you what "common" means in terms of the side effects, and also how effective it is. After much surfing I found an Australian hospital's drug sheet that showed that sulfasalazine is 50 to 60 per cent effective and that a third get the vomitting nausea headache effects. That's not a great balance and of course everyone gets the inconvenience of the testing, the Orange effect and the mental effect of being on a life sentence. I was wondering if mtx might be better if I can limit the wine, only once a week. No orange , which bothers me, and apparently more effective.
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Date: 25.04.2016
From: foxed

Subject: Re: Sulfasalazine OR Methotrexate?

It's a bit horses for courses, Ian. I've been through a whole load of drugs which either didn't work or gave me unacceptable side effects. Other people do really well. It's very hard to make a decision about which one to take and I've been reluctant to start some of them.
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Date: 25.04.2016
From: ian3900

Subject: Re: Sulfasalazine OR Methotrexate?

Thanks Foxed I am a finance director, you are right of course, and this is very alien to my way of analysing things!
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Date: 25.04.2016
From: Adam

Subject: Re: Sulfasalazine OR Methotrexate?

I've been taking incapsulated a variety of 30 different fruits, vegetables and berries for the past 8 months and my arthritis is hardly an issue anymore. This is because of all the nutrients and berries reduce inflammation. Hope this helps everyone.
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Date: 26.04.2016
From: Shae

Subject: Re: Sulfasalazine OR Methotrexate?

Adam, can you share what you are taking? Very curious.
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Date: 26.04.2016
From: Kathryn

Subject: Re: Sulfasalazine OR Methotrexate?

Yes, please share your info Adam, I am very interested in using diet to help reduce inflammation and would value some advice. I would also be interested to know if you have any dietary foods/drinks that trigger your arthritis.
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Date: 26.04.2016
From: Eve

Subject: Re: Sulfasalazine OR Methotrexate?

I am not interested in what Adam has to say. The reason being is because from past experience , he is gearing up to sell or promote a product on this site.
I am all for sharing information. I am also a great believer in the benefits of diet and gut health. So much so I ferment my own vegetables and make water kefir. Its very cheap and simple to do and there are hundreds of recipes to view , for free, online.
In my opinion, you don't need expensive encapsulated supplements to lower inflammation.
Its much more beneficial to eat lots of root ginger , pineapple ,turmeric , wild salmon, olive oil, celery, oregano, parsley, plums, cherries, sardines, lemons , garlic, watercress...the list is endless.
I shop weekly at my local outdoor market and can buy all that's listed and more, for around £15. Much cheaper than super market veg prices.
Im not into encapsulated supplements , unless its a mineral or vitamin that I couldn't incorporate into my diet through fresh produce alone.
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Date: 12.05.2016
From: Judy Stanfield

Subject: Re: Sulfasalazine OR Methotrexate?

Hey Jeff, if it was as easy as taking magnesium or rose hips to cure rheumatoid arthritis! I've tried every healthy alternative before I had to give up and go for the pharmaceuticals. I don't like the big Pharma companies any more than you do. But, pain and continued joint inflammation have made me try the Humira and methotrexate. I have too much to do to end up crippled or in a wheel chair.
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Date: 12.05.2016
From: Suz

Subject: Re: Sulfasalazine OR Methotrexate?

There is no cure for this disease either by Herbal or conventional as anything that is stopped the disease symptoms returns. what people are discussing here is which method is safer and more effective. the herbal and diet approach or the conventional drug approach.
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Date: 18.05.2016
From: Robert

Subject: Re: Sulfasalazine OR Methotrexate?

Back again :-)

Well the good news is my WBC is up to normal levels again, so apparently it had something to do with the drugs.

The bad news is the doc doesn't want me to go back on Sulfasalazine. They want me to try something new out. What that is I do not know yet.

I'm just hoping for something good and that it comes quick :-(
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Date: 25.05.2016
From: Shae

Subject: Re: Sulfasalazine OR Methotrexate?

I decided to go ahead with methotrexate. I just finished my 4th week of 6 tablets per dose. I have not had any major side affects. She is increasing to 8 tablets now, - anyone's opinion - do you think if I were going to have side effects, i would know by now? Or is it too early to tell? #hoping
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Date: 30.05.2016
From: Katie

Subject: Embrel and the right drug for you

I agree that the anti TNF is probably the treatment that has the strongest success. I agree that we seem to have to jump through hoops before we are prescribed it and try all the cheaper ones first. My own experiences over many years has shown that everyone is so different that every patient needs to be looked at individually and checked out thoroughly for everything that might cause complications in your disease. I think you go through different mindsets depending on how long you have had to live with RA. At the beginning, with a little bit of denial, I was happy to try the least toxic drug and persuaded myself I was ok with it because I was terrified of the others. Sulfasalazine was my drug for a year. It affected my liver then and I had to switch to Methotrexate. My liver quickly returned to normal after I stopped Sulfasalasine. I found myself a consultant on the NHS who I have a bit of confidence in and a super support nurse. I was unable to tolerate Methotrexate tablets but the injections were absolutely fine. They did me for another couple of years and then all of a sudden, it was like the script changed overnight in my consultant's office. I had accepted the bad days and the tiredness as a necessary part of the OK days on Meth, then suddenly I was told that I could not tolerate it any more. It was not working well enough for me and I qualified for anti TNF drugs! It was like winng a trophy to the 'people who will feel the best club!' I tried Humira first and it was good for the RA but changed my immune system too much so that I had strange skin and blood vessel problems and an instant lung infection. I tried Embrel and BINGO, it works well for me. I've been on it for 2 years. Lately however, I have had some problems: lung infections, vocal chord cyst that has to be operated on, bronchioectsasis and an MRI scan has shown some inflammation in my sigmoid colon. My bloods are good. I can do more than before and my stamina is much better. We have a huge garden and land so I have to be active. I would be interested to hear from anyone with similar experiences or any helpful advice? So far Embrel has had the best control of the RA, but I do not know whether the other problems would have occurred anyway or whether the Embrel has caused them?
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Date: 01.06.2016
From: Debra

Subject: Re: Sulfasalazine OR Methotrexate?

I've had RA since I was 24, that's 37 years now...tried everything the medical establishment could throw at it the first 19 years; many things worked for a couple years or not at all. But that's the way this works! If you get longer than a few years on a drug, you are lucky.I was on Gold shots, plaquenil, methotrexate, pennicilimine, and other stuff.

Then 18 years ago I read about antibiotic therapy, and after they did FDA trials I got on it in 1998. I had 17 years of total remission. Fabulous stuff. Then a year and a half ago, I got very sick with pericarditis (fluid around heart) and I thought I would die from it. Cleveland clinic worried it might be drug induced lupus from the antibiotic I was on all those wonderful years. (Minocycline)It is a rare but possible complication.

Anyway, I got off it a year ago, and back on plaquenil. (which had caused bone marrow suppression in my younger years) I had never tried sulfasalazine, so started on that in December, along with the plaquenil. I have had my RA go away, but the 4 pills of sulfa per day seem to be causing problems. My white cell count dropped (could be the plaquenil though or the combination) and the other thing I am having is a pressure and Lump in my throat feeling, which after some research, I found others on sulfasalazine had!

I am also hoarse, and having an awful time. Severe neck pain in my right side, back of neck as well. I have cut down to 2 a day, and even skip a day now and then to feel better.

I called my new rheumatologist, (my old one retired!) asking about the white cell count, and no one has called me back. Unbelievable. Anyway, I see the new doc on June 7th. I sure wish I could try minocycline again, just in case it wasn't the cause of all the illness-sometimes after many years of RA, you can get what they call "extra articular" events. Like pericarditis, vasculitis etc.

But I always avoided the heavy meds- TNF's and biologics all these years-for fear of lymphoma, leukemia and all those deadly "side effects" they talk about. Now this "lump" in my throat is scaring me, and they found a thyroid nodule and I will hear the biopsy results the same time as I see the new rheumy.

It's been a long long road with this disease, but we all want to live long lives, pain free as possible. I hope I can either try methotrexate again (it caused my liver enzymes to rise after 6 years when I took it before). I was on it in the 90s and did well until the liver tests showed probs. Now I am reading they don't usually take you off it when that happens, they just reduce dosage etc and try to adjust. So maybe it will be ok this time.

The tight throat, lump in my throat feeling has me worried, and several others on sulfasalazine described the same thing. I hope it's just that, and maybe methotrexate will solve my problems for a while longer. Sulfasalazine definitely seems safer to me, but they all have their issues, as you've all mentioned. Good luck to all, and let me know if any sulfa users have had this tight throat, lump in throat feeling. It's awful, but I think its rare and not many get it...,
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Date: 21.06.2016
From: Theodore John Kountouris

Subject: Re: Sulfasalazine OR Methotrexate?

I have AS EMBREL only work advise from
Many professionals the rest no , methotrexate is very toxic so any immunosuppressive drug however caution on EMBREL lower the immune can activate cancer as I remove my thyroid for cancer , nasty staff , all those is blood disorders , immune issues go easy on TNF BLOCKERS give some brake
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Date: 21.06.2016
From: lois

Subject: Re: Sulfasalazine OR Methotrexate?

I am not sure what this post means ????????
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Date: 22.06.2016
From: Colin W

Subject: Re: Sulfasalazine OR Methotrexate?

lois you are not the only one ,

Debra , the problems with raised liver enzymes can be controlled with increased folic acid , will help with other side effects from MTX , the drug is alot more effective than sulpha or AP which helps with mild RA , know some people dont like using MTX but it is very effective for th majority of RA sufferers ,

one drug I would recommend is Leflunomide , found is very good after coming off MTX & taking it along with Sulpha & a biologic + steriods
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Date: 07.07.2016
From: Kathryn

Subject: Re: Sulfasalazine OR Methotrexate?

I have been on Sulfasalazine for approx 1 year, it hasn't been working so my rheum has told me to take mtx alongside it, 6 tablets weekly. I have been taking mtx for 3 wks and so farhave felt pretty rubbish. Nauseous, dizzy, extreme fatigue (extreme is not an understatement!!) really off my food so much that I've lost weight. I also feel like my hair is suffering (sounds vain I know) it just feels thin, although I'm not sure if this is psychosomatic because I've been told it could happen?! I am hoping this is just my body getting used to the change in meds, if this is going to be how I feel on them all the time I give up - it's too hard 😢
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Date: 07.07.2016
From: Kathryn

Subject: Re: Sulfasalazine OR Methotrexate?

Debra

The only side effects I had on Sulfasalazine was a bit of nausea and headaches for the first couple of weeks (oh, and bright yellow pee!) the nausea and headaches subsided and I had no more side effects after that. Sulfasalazine just didn't work at all for me unfortunately so I'm now on a combination of Sulfasalazine and methotrexate (apparently they can work together if not on their own?!) I feel crap on the methotrexate, it's still early days so I hope things get better. Good luck to you you sound like you've had along road with it ❤️
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Date: 18.07.2016
From: Alana

Subject: Re: Sulfasalazine OR Methotrexate?

Hey! I'm a 20 year old female and have been on Sulfasalazine for about 6 months now. I got diagnosed with secondary arthritis 2 years ago for having strep throat in my system for too long. It has worked pretty good but now I have pain around my lungs and makes it hard to take deep breathes. I went to my lung doctor- everything was fine but it was the muscles around my lungs making it very difficult to breathe. I'm going to be continuing the Sulfasalazine but going to be on prednisone for a little since I'm getting joint aches again ):
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Date: 19.07.2016
From: lucy

Subject: Re: Sulfasalazine OR Methotrexate?

Hi Alana, Sorry to hear that you were having breathing problems but it's good that you went to a lung doctor and were told everything was fine. The steroids should help you a lot and i hope you don't have to be on them too long. Do you have a rheumatology nurse that you can call for advice? Do you swim? perhaps swimming would help your lungs. Good luck and i hope you feel better soon x
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Date: 22.08.2016
From: jackieo

Subject: Re: Sulfasalazine OR Methotrexate?

first time on forum and found it very helpful started methotrexate today
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Date: 23.08.2016
From: lois

Subject: Re: Sulfasalazine OR Methotrexate?

Hi Jackieo, welcome to the forum. Glad you have found it helpful. Good luck with the methotrexate.

Take care
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Date: 29.08.2016
From: randomgini

Subject: Re: Sulfasalazine OR Methotrexate?

Hi Everyone, first of all thanks to everyone, this thread and forum is very helpful! I am a arthritis newbie so reading up on my condition a lot. I am 43 and just got diagnosed of Spodyloarthritis and potentially RA. Developed pain in Hip, huge knee swelling (needed effusion) and shoulder pain over the last 3 months. HLAB27 positive, High CRP and ESR. RF is negative so doctor excluded RA initially. However, later Anti-CCP test came out positive, which is more specific to RA, so now the doctor is saying I might have RA. However, all my symptoms point to Spondyloarthritis (large joins, pelvic join pain, lower/upper back stiffness). Anyways, doctors are recommending starting either on Methotraxate or Sulfasalazine. IMO confusion on whether I have xSPA or RA is problematic. Any advice/pointers is helpful!!
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Date: 29.08.2016
From: Sean

Subject: Re: Sulfasalazine OR Methotrexate?

My advice is that disease names are labels to link to symptoms - underlying causes of RA and AS (Hla-b27 positive) are similar - the difference being the Genes you carry - which interplay with the antibodies that are generated due to presentation of foreign protein antigens.

I have read of cases where both conditions have been diagnosed - so I guess these individuals carry genetic susceptibility for both conditions.
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Date: 19.12.2016
From: Dave

Subject: 944516

If you can't stop drinking alcohol do not go on methotrexate. I was on 17.5mg / day for 2 years and now have a damaged liver, because I did not cut out the wine. Sulfasalazine has been OK but I can't take more than 1000mg a day without becoming really ill and massive cold sore outbreaks on lips. However my reactive arthritis (HLAB 27) pretty well controlled by Sulfasalzine plus 120mg Depo Medrone shots 2x / year. Last CRP was at 7 which is the lowest it has been in 3years.
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Date: 19.12.2016
From: Sean

Subject: Re: Sulfasalazine OR Methotrexate?

Hi Dave

I just stumbled on this on the use of Sufasalazine and it's modus operandi in HLA-B27 Reactive Arthritis.

It appears that Sufasalazine either has an effect on gut bacteria or impacts the immune response to gut bacteria !

Antibodies to Klebsiella pneumoniae, Escherichia coli, and Proteus mirabilis in ankylosing spondylitis: effect of sulfasalazine treatment.

https://www.ncbi.nlm.nih.gov/pubmed/7869314
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Date: 20.12.2016
From: Colin W

Subject: Re: Sulfasalazine OR Methotrexate?

Hi Dave

shame about your liver problems , long term Methotrexate can cause liver problems even without drinking , Folic Acid helps with alot of the side effects from MTX including raised ALT (liver blood test )

there are other drugs they can try but talk to your rheumy Team
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Date: 18.01.2017
From: Ravhel

Subject: Re: Sulfasalazine OR Methotrexate?

Lol had someone tell me to take cod liver oil the other day! So annoying :(
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Date: 18.01.2017
From: lucy

Subject: Re: Sulfasalazine OR Methotrexate?

I've had that said to me as well, Rachel, or they say they have a touch of arthritis too. I used to get really annoyed when people would say *oh you have to expect it as you get older" I was in my forties when I was diagnosed but I know some people are so much younger, so nothing to do with age either.
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Date: 13.04.2017
From: juliet

Subject: Re: Sulfasalazine OR Methotrexate?

My mother rheumatoid arthritis (RA) started two years ago at the age of 49; and her life was not the same. it started with traveling joint pain. she went to many doctors, it took a year to diagnose, and the only reason my motehr was diagnosed was because she have nodules and they removed one and it came back as RA. she have been in pain every day.(RA)is a horrible disease,she have been on one pill a day of diclofenac. If she don't take it, by the third day she can hardly move and she feel like she have the flu.My friend David ossy told me about Perfecthealthherbalmedicinehome, who cured his uncle of same disease (RA). I contacted this herbal home and purchase the herbal medicine, then they sent me the herbal medicine through courier service, when i received the herbal medicine my mother applied for 4 weeks as prescribed and she totally cured of (RA) within 4 Weeks of usage,now she can walk properly,no joint pains anymore, thanks to perfecthealthherbalmedicinehome.It is important not to give up.. Contact Perfecthealthherbalmedicinehome via:
email:(perfecthealthherbalmedicine @ gmail com)
website:(www . perfecthealthherbal. weebly. com)
Phone number: +15865016759
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Date: 14.04.2017
From: Anne

Subject: Re: Sulfasalazine OR Methotrexate?

Well said! Until you have experienced it you can have no idea of the pain involved its horrendous and life changing.
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Date: 16.09.2017
From: ski

Subject: Re: Sulfasalazine OR Methotrexate?

Hi- I was diagnosed 6 months ago with RA and started on Mth-came off it after 2 months as it seemed to be making the RA worse immediately after dosage. Put on sulfasalazine and am on 2nd week of tablets x2.I am really struggling with The side effects! headache, ringing in ears, feeling sick to the point where you cant eat or sleep. I dare not stop the drug as my knees are so painful I am struggling to walk and trying desperately to hang on to my job.I find myself crying most of the time and often feel suicidal.
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Date: 23.09.2017
From: Jo

Subject: Re: Sulfasalazine OR Methotrexate?

Hi I've been on Mth for the last 6 months with no side effects till 2 weeks ago when I started to get tingling on my scalp and a lot of hair loss . Have spoke to the nurse and they have offered to put me on sulfasalazine has any one experienced hair loss with this drug , I know this sounds vain but I am loosing a lot of hair
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Date: 25.09.2017
From: Sean

Subject: Re: Sulfasalazine OR Methotrexate?

Hi Jo - Methotrexate interferes with Folic Acid synthesis (as this is controlled via gut bacteria, which are disrupted by MXT antibiotic effects).

Ask your doc - but might be the reason if you are not tasking enough.

Here is a thread from a lady that had same hair loss and what she tried.

https://patient.info/forums/discuss/tips-for-avoiding-hair-loss-on-methotrexate-301201
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Date: 25.09.2017
From: Colin W

Subject: Re: Sulfasalazine OR Methotrexate?

hi Jo , you should not be getting hair loss with the amount of methotrexate you take compaired to people with cancer , you can ask to take higher dose of folic acid mg six times a week , but I would see your GP , there are other reasons it could be
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Date: 15.01.2018
From: River

Subject: Re: Sulfasalazine OR Methotrexate?

Hello, I hope it's OK to resurrect this long thread. I was diagnosed with RA way back in 1999 but only found this forum a week or two ago and have been slowly reading through some of the posts including this entire thread.

When first diagnosed I was determined to try to control the RA with means other than conventional medication and surgery and tried all sorts --nutritional approaches, shiatsu, Chinese herbs-- some of which helped a little but not in the long term. Then I did go on some medication, naproxen, co-codamol, also steroid injections, and then had two knee replacemnets in 2011. But I still resisted the DMARDS, so afraid of what I'd read about side effects, possible organ damage, and suppressing the body's immune system.

Then this past September the RA moved into my hip, where I'd never had pain before (since the knee replacements, the pain was mostly in my feet and ankles, also my shoulder). And it had never been so bad, I could barely move especially in the mornings and it took me literally hours to go from bed to being able to leave the house. My GP re-referred me to rheumatology (I had sort of fallen off the radar as things had been fairly stable and I didn't want more meds) but it took ages to get an appointment. Meanwhile they were investigating my weight loss and anaemia in case it was anything life-threatening (ie cancer-- doesn't seem to be, touch wood).

In the meantime my GP prescribed MST (slow-release morphine) --an absolute god-send-- and prednisolone, and the pain has decreased quite a bit (before that I was on tramadol which did nothing for me).

Anyway, I finally had my rheumy appointment today and have been prescribed methotrexate.

Some of the posts upthread about being so scared of these pills and the side effects ring so true to me. I also can't help irrationally feeling like a failure for not being able to cope without these harder drugs.

And it's good to see some of the other posts in this thread too, eg Shae who was so scared then finally took the M. pills and didn't experience any side effects after all. And Angela back in 2011 has given me hope saying

"Within 3 months and no side effects,my esr and crp has dropped to near normal, I can walk much better and have no aneamia.The mtx had worked quickly and effectively. "

And reassurance with "Looking back I think trying natural was a positive move, and taking the MTX was also a positive move. "

I don't know who from this thread is still around but thank you. I am planning to take my first weekly dose tomorrow --if I am brave enough-- in case there are any immediate ill-effects, as I don't work on Tuesdays. Fingers crossed and it is really good to find people facing some similar problems and worries and fears, not to mention the physical pain.

[Sorry for long-windedness on my first post!!]
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Date: 16.01.2018
From: River

Subject: Re: Sulfasalazine OR Methotrexate?

Wow, it's quiet in here. I didn't really realise how deserted it is. So much for chatting with people with comparable experiences. What a shame.
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Date: 16.01.2018
From: Colin W

Subject: Re: Sulfasalazine OR Methotrexate?

hi it is very quiet , some in the UK post on Arthritis Care forum , as for Methotrexate , just make sure you get enough Folic Acid to help with the side effects , mg six days a week & you will be fine
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Date: 16.01.2018
From: River

Subject: Re: Sulfasalazine OR Methotrexate?

Thank you Colin. Did you mean to type 5 mg folic acid six days a week? That's what I've been prescribed. Took my first dose of Methotrexate this morning, so far so good (well, so far so neutral).

I will take a look at the Arthritis Care forum as well (I am indeed in the UK).
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Date: 16.01.2018
From: lucy

Subject: Re: Sulfasalazine OR Methotrexate?

Hi River, It has got very quiet, not sure what's happened to everyone. It hasn't helped when we get so many of the silly posts taking over our site advertising fake diplomas.

I also felt worried about starting methotrexate but they do regular blood tests to check for any liver problems etc so try not to worry too much and i hope it helps you.x
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Date: 16.01.2018
From: Colin W

Subject: Re: Sulfasalazine OR Methotrexate?

some people fell sick with Methotrexate , the other main side effect is liver raised ALT (inflammation of the liver ) & why you need to get bloods done but folic acid helps with hair thinning & alot of people have no side effects at all
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Date: 16.01.2018
From: River

Subject: Re: Sulfasalazine OR Methotrexate?

Hello lucy, yes I saw some of those posts, I'm surprised they don't just get deleted.

Yes that's true about the blood tests. To start off with I am having them every two weeks, then monthly. So they do keep an eye on you, that's true. Thanks for the good wishes, I hope you are doing OK yourself.
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Date: 16.01.2018
From: River

Subject: Re: Sulfasalazine OR Methotrexate?

Oh yes hair loss, I was worried about that one too, to be honest all the possible side effects sound pretty unpleasant, even if not hugely serious (like lung damage which does seem to be fairly rare). I don't fancy getting chronic diarrhoea or vomiting either. And then there's the increased suceptibility to infections. But still, not everybody gets everything so we shall see.
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Date: 23.01.2018
From: Carol

Subject: 481812

hope I don't get too many of those symptoms!! Haven't started meds yet as have only had one meeting with the rhuemy just waiting for results of everything and have an appointment on 20th feb. I too like a couple of glasses of wine on a night so hope I don't start on the methotrexate. Pain around body and knees have been helped by the steroids and co-codamol but wrists and fingers are still painful. The worst is the thumbs. Find I cant do most things as they are too painful.
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Date: 23.01.2018
From: Ruth

Subject: 868727

I ended up in Casualty due to chest pains while taking Methotrexate so discontinued. This is week 16 of taking Sulfasalazine. Not impressed. Continual feelings of nausea, occasional dizziness, depression, pins and needles in feet, frequent headaches and no ache and pain improvement. Seriously considering discontinuing. And depending on the specialist my diagnosis has been osteo arthritis, sero negative arthritis and psoriatic arthritis. Have a rheumatologist appt in March so maybe I can try another med?
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Date: 06.02.2018
From: River

Subject: Re: Sulfasalazine OR Methotrexate?

I rang up to get my prescription renewed today, as instructed, having not noticed any side effects from the methotrexate. (I've just taken my third weekly dose today.) To my surprise the folic acid dosage has been reduced from one tablet daily apart from the day I take the methotrexate, to one tablet weekly (not on the day of the methotrexate dose). I rang up to make sure this wasn't a mistake but apparently it was correct. I'm really not sure why the change has been made given I haven't seen the rheumy again, and I just hope I don't start noticing side effects as a result...

Sorry to hear of your experience, Ruth, and hope a solution can be found.
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Date: 06.02.2018
From: lucy

Subject: Re: Sulfasalazine OR Methotrexate?

When i started on methotrexate I was told one 5mg folic acid three days after the mtx. and I believe this is the normal dose. I know some people take more to help with side effects.
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Date: 06.02.2018
From: River

Subject: Re: Sulfasalazine OR Methotrexate?

Thank you, lucy. I was started on a much higher dose, as I say, and didn't understand why it has been reduced so much. But if one 5mg tablet a week is normal I suppose it must be OK. It just makes me nervous given I have been so afraid of the side effects to begin with.
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Date: 07.02.2018
From: lucy

Subject: Re: Sulfasalazine OR Methotrexate?

If you do suffer any side effects then you could increase the dose again, River. I would always take mtx after food.
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Date: 07.02.2018
From: Colin W

Subject: Re: Sulfasalazine OR Methotrexate?

I would ring your rheumy nurse , I was on one 5mg folic acid tab/week for years but had problems with raised ALT (blood ttest for Liver inflamation)& when raised to six tabs a week my ALT when back to normal , I never had any other side effects & was on it for 18 years
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Date: 07.02.2018
From: River

Subject: Re: Sulfasalazine OR Methotrexate?

Thanks Colin, I don't have a contact number for a rheumy nurse apart from the general rheumatology department at the hospital but I suppose I could ring and ask to speak to someone. I wonder too why it seems to be either one option or the other, ie one tablet per week or six per week, why not reduce it gradually if you're going to reduce it.

Just wish I understood this! And I'm not seeing the consultant again until April. Maybe I will sign up to the other messageboard to get some more perspectives and/or information as well. Or maybe I am just worrying too much...
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Date: 17.04.2018
From: Mick

Subject: Re: Sulfasalazine

Can i take morphine when on sulfasalazine, im in terrible pain all over, been on them now 2 weeks so just getting going. Thanks
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Date: 06.07.2018
From: Lynan

Subject: Re: Sulfasalazine OR Methotrexate?

Hi everyone! New to the forum ( I am in New Zealand) but would like to share my experiences with Sulfasalazine. Was DX'd with RA 10 years ago and I am extremely grateful to my rheumatologist for figuring it out quickly as I was on meds 2 weeks after first seeing him. I know some people wait months for a DX.
Initially, I presented as a near cripple! Could hardly walk, could not make it to the bathroom during night so you can imagine how bad it was. My Rheumy took bloods, injected my wrists with steroids ( my hands were numb almost continually) and put me on a reasonably small dose of prednisone to wait until my results came back. When results came in, He asked if I wanted to do MTX or the Sulfa...he gave all the pro's and cons. Like some of you here I like my wine and the thought of giving that up was not going down well.So I chose the sulfasalazine/plaquenil combo. Ten years on, I am still pretty much pain free. I can feel the RA in backs of my knee's some days and I still get numb/fizzy hands most nights but I can live with that. I last saw my rheumy 6 years ago. My bloods only get done annually now and are perfect. He doesn't know it but 4 years ago I reduced my sulf down by 1000 mgs a day. Only 2 tabs daily instead of 4. Works for me. So far! Best of luck to you all and I hope you can all find the combo that works for you and keeps you as painfree and mobile as possible. xx
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Date: 06.07.2018
From: Lynan

Subject: Re: Sulfasalazine OR Methotrexate?

Mick asked " Can i take morphine when on sulfasalazine, im in terrible pain all over, been on them now 2 weeks so just getting going. Thanks"

Oh I am so sorry to read this. Please get in touch with your rheumatologist or his staff to get it sorted Mick. NOBODY should have to suffer terrible pain. Sometimes it cannot be taken away but at least it should be able to be alleviated. Maybe consider taking to the Dr about combining plaquenil with the sulfa. It wont work for everyone but did for me. Otherwise a short course of prednisone (7/10 days) to help you have a rest from pain and to get some new meds started. Good luck.
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Date: 07.07.2018
From: Sharon Warden

Subject: Re: Sulfasalazine OR Methotrexate?

I was taking 500 mg Sulfasalazine twice daily. I have taken it now for 3.5 years I seen my rheumatologist yesterday, she told me to stop taking it because of my liver. I am afraid of the pain coming back
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Date: 20.10.2018
From: Jon

Subject: Re: Sulfasalazine OR Methotrexate?

Hi , everyone
I started taking Sulf 3 days ago , was prescribed it in April but was to afraid to take it
Just wanted to ask anyone that I have had terrible diarrhoea after day 2
Is this normal please
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Date: 23.10.2018
From: Chocolady

Subject: Re: Sulfasalazine OR Methotrexate?

Mick ..i have just been given sulph as meth gave me bad nausea and fatigue .. but Iām on OxyContin and Oxynorm x
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