Arthritis Forum
Home.

News.

Personal Stories. Links. Message Board.  
Arthritis Forum  
Add your comments to this topic Start a new topic
Date: 10.07.2014
From: sleepydanielle

Subject: Really worried that i shouldn't have come off my meds :(

Hi, sorry for long post :( i come on here often but haven't posted in a while.
I have been taking sulfasalazine for the last 3 months or so. They have really helped and i have felt so much better and pain free. My next appointment with rheumatologist isn't until Monday (14th). I came off the meds last saturday (5th) because i had taken them for the amount of weeks that i was told to. I should have had an appointment with rheumy ages ago but when i called to move it forward they said he was too busy and had no time slots. I explained that my course of meds would finish before my next appointment but the lady told me it was best to stop them and that sulfasalzine stays in your system for a while anyway so it was fine.
I did what she said and stopped them 5 days ago. Since then i have felt worse again and i'm so gutted. I don't feel awful but my fingers feel sore as do my ankles and my left arm muscle feels tender.
I was doing ok on the meds and now that ive stopped them i feel like i'm back to square one. I am also worried that the lady on the phone was wrong about it staying in my system because why has all my soreness come back so quick then? And now if i start them up again am i going to have to build the dose up all over again?? I felt like this was all going away and now i've messed it up. What if my body doesn't like it if i suddenly start taking them again and my RA becomes worse?
I am so worried about this im in tears and i'm also annoyed that i haven't been able to get an appointment. Please can anyone help or advise. Thank you so much :(
reply | back to forum

Date: 10.07.2014
From: bsk

Subject: Re: Really worried that i shouldn't have come off my meds :(

Hi Danielle, what do they expect you to do, your meds are finished and you can't see your rheumy. Don't blame yourself for this and try not to worry. It's only a few days until the 14th but if you are scared about how you are feeling, ring your gp for advice. Sometimes they can get through to a rheumy if you can't. You could also try ring the hospital pharmacy for advice.
reply | back to forum

Date: 10.07.2014
From: sleepydanielle

Subject: Re: Really worried that i shouldn't have come off my meds :(

Thank you. I don't know what they expect me to do, the woman on the phone was really unhelpful, she told me to just stop taking them and she said that even before i had told her what the meds were!
I said i need to be sure it's ok to stop them and she looked them up and said they stay in your system for a while so it's fine. So i thought ok then, but then when i started getting sore again i starting questioning if this was correct. I can't find any info about how long they stay in for but i'm not convinced it was ok to go from 4 tablets a day to zero. I feel so daft now because i should have gone with my instincts but instead i listened to the lady on the phone :(
I do have some tablets left but my prescription says only take the full 4 tabs a day for nine weeks only.
Ive just taken one 500mg tab this eve with dinner, i kind of took it in panic because i'm worried about not having any in my system. I think i may take 1 a day until my appointment.

I tried the gp and they said they are only dealing with emergencies, i never seem to speak to anyone competent anyway. May try again tomorrow although my app is monday so i may just wait now until then.
Thanks for your help. It's bad enough dealing with this but more exasperating when i can't even speak to anyone helpful or even have an appointment when i am meant to. :/
reply | back to forum

Date: 10.07.2014
From: Julie

Subject: Re: Really worried that i shouldn't have come off my meds :(

Did you get the name of the lady who told you to stop taking them, was she a rheumatology nurse? or one of those receptionist who think they have medical knowledge.

I wouldn't worry about them coming out of your system, they have a half life of 36 days, so it is about 172 days before they are fully out of you. (only earlier tonight I looked it up for myself how long it takes) I have stopped my sulphasalazine (6 a day) two weeks ago after being on them about 9 months and not noticed any difference yet apart from the rash and itchiness on my arms has gone, thankfully.

You could maybe ring g.p. and ask for a telephone appointment or leave a message with receptionist to get his advise and ask her to ring you back with answer. After all our g.p.'s and rheumatologists work together with our treatment - or they should be!!!

Good luck and hope you are not in too much pain until Monday.

Julie
xx
reply | back to forum

Date: 11.07.2014
From: sleepydanielle

Subject: Re: Really worried that i shouldn't have come off my meds :(

Hi Julie, thank you. I got the name of the lady i spoke to but i don't know whether she was a rhuematologist or not....she didn't sound like one!
The hospital reception gave me the number for my rheumatologists secretary and told me she would be able to give me an accurate answer. When i called the secretary she told me the rhematologist doesn't have a secretary!
Anyway she was rather rude but i explained the situation and that i was given the number by reception. I asked if there was someone who could call me back but she said there was no need as i could speak to her!
Anyway i'm going to tell my rhematologist on monday about it and tell him what she told me to do. I don't understand why these receptionists are happy to give people medical advice if they do not know the correct answer. I would worry about telling someone the wrong thing!
Thanks for the info about sulfasalazine, where did you find that out because i typed all sorts of things on the internet and i couldn't find a proper answer. Glad it stays in the system a long time, its confused me though why i felt sore again so quickly after stopping them? Did you wean yourself off yours or did you just stop? Thanks again xx
reply | back to forum

Date: 11.07.2014
From: Bsk

Subject: Re: Really worried that i shouldn't have come off my meds :(

Danielle, I would have told the gp it was a medical emergencies. Stopping a medication or running out can be so don't let the receptionists put you off. I hope you get through the weekend ok.
reply | back to forum

Date: 11.07.2014
From: Julie

Subject: Re: Really worried that i shouldn't have come off my meds :(

Hi,
I just typed in 'how long does sulphasalazine stay in system when stopped being taken' all sort of things came up I just went through them all.

I just stopped them, didn't wean off or anything and it took about a week or so for my rash to go away. But I must say it took about 3 months before it worked for me, but I was also taking methotrexate, (plus loads of other stuff like most people take)

I hope you get sorted on Monday its a long time to go without medical guidance. Keep us informed of what happens when you go on Monday. Good Luck.
reply | back to forum

Date: 11.07.2014
From: Julie

Subject: Re: Really worried that i shouldn't have come off my meds :(

Hi if I can find the info again I will send you the link.
Julie
xx
reply | back to forum

Date: 11.07.2014
From: Colin W

Subject: Re: Really worried that i shouldn't have come off my meds :(

hi danielle , restarting sulfa should be fine if you got on well with the drug , just dont make sence to stop a drug that is working for you
reply | back to forum

Date: 11.07.2014
From: sleepydanielle

Subject: Re: Really worried that i shouldn't have come off my meds :(

Thank you, maybe i was wording it wrong when i searched.

I wont let the receptionists put me off in future. I wish i hadn't of stopped it to be honest but i thought i should take it for as long as what my rhuematologist told me to, especially as its the first time i have been on this medication.
It didn't make sense to me to stop it either so i am going to carry on with it. I suppose at least i know now that i do still need to take it although wish i didn't have to.
Mainly my ankles hurting today and shooting up my leg a bit. Arm muscle hurts too but i don't know if thats the RA or not xx
reply | back to forum

Date: 14.07.2014
From: sleepydanielle

Subject: Re: Really worried that i shouldn't have come off my meds :(

Hi. Just come back from my appointment. The rheumatologist has told me is still need to take sulfasalazine 4 tablets a day so 2g in total. I was hoping he would reduce the dose but he said i should be on 2g a day for at least a year. Is anyone else taking this much? It seems alot.
He also said my blood tests were ok but my inflammation was around 3.6. He said its come down a little but when i came home and looked it up it says anything above 3 is high and high risk for cardiovascular disease!! They hadn't told me my levels before but i asked him as wanted to know.
Does anyone know what their inflammation levels are? Bit worried. Xx
reply | back to forum

Date: 14.07.2014
From: Colin W

Subject: Re: Really worried that i shouldn't have come off my meds :(

hi danielle , 4 * 500mg tabs is standard for arthritis , some people with other conditions like ulcerative colitis take 16 tablets a day so dont worry to much , your inflamation marker is very low so that is also good & shows the drug working

just be careful what you read on the internet , not everything is correct & stick to sites like NHS direct or the main charities & if you are worried check with your rheumy nurse
reply | back to forum

Date: 14.07.2014
From: sleepydanielle

Subject: Re: Really worried that i shouldn't have come off my meds :(

Thank you. Yes he said inflammation has gone down a bit which was good.
I don't know whether the 3.6 was for ESR or CRP as i had both tests so I phoned gp surgery to clarify the results but she hasn't phoned back. He did say in healthy people it should be around 1 or below so i think mine seems quite high.

I asked if i could reduce to 2 tablets a day but he said if i don't keep taking the 4 tablets a day then i will go back to feeling awful like i was before. I suppose that means i will have to stay on them forever.
reply | back to forum

Date: 14.07.2014
From: Julie

Subject: Re: Really worried that i shouldn't have come off my meds :(

Good you got sorted. I wish my level was as low as yours, I bet a lot more people on here do!!

Don't worry about taking the sulpha, they check your blood a lot and if they see any problems you will be taken off the drug.

I have been on sulpha for about 9 months, just been taken off it because I started with a lumpy rash on my arms that itched, but this was only couple of weeks ago, up to that I have been okay with it.

I also had blood and protein in my urine which I was told is a side effect of sulpha because it can affect your kidneys. All I would say is that if you think you may be going for a wee more than usual, or if you have back, side or groin pain, even if it is slight go to g.p. and mention it, don't just think like I did that 'oh its nothing just another ache or pain to go with RA' its easily sorted and is picked up in your tests, that's why they are done so often.

Must say I have only been off (I was on 6 a day) them for 2 weeks but not noticed any difference, but I am at g.p. tomorrow for results of last weeks blood tests so we will see what he says.

Don't be afraid of taking them, if you have never had kidney stones or kidney trouble you will be fine.
reply | back to forum

Date: 14.07.2014
From: sleepydanielle

Subject: Re: Really worried that i shouldn't have come off my meds :(

What is your inflammation level? I think mine has been higher than 3.6 before but apparently thats what it was 6 weeks ago and now its a little less.
Is kidney problems the only effect of taking sulpha long term? I kind of worry that there are other negative things that it is doing. Can it cause increased risk of other diseases?
I am pleased that it is helping me i just never like the thought of taking medication because they may help one problem but then can cause another :/
reply | back to forum

Date: 15.07.2014
From: bsk

Subject: Re: Really worried that i shouldn't have come off my meds :(

Danielle, you should have been given information by your hospital before starting but have a look on Arthritis Research UK website for information.
reply | back to forum

Date: 15.07.2014
From: Julie

Subject: Re: Really worried that i shouldn't have come off my meds :(

Hi Danielle, you must remember that we are all different. Any questions you may have you should really ask a rheumatology nurse or doctor. We can all give a little advice but at the end of the day none of us are doctors.

Hundreds of people take these drugs and are leading near to normal lives. As bsk says be very careful what you read and never change or alter your meds without doctors say so.
As for my inflammation level at moment it is 9.2 and that to me is absolutely heavenly, it is normally in the 100's, even 200's, so you see like I said what is normal for one is totally different for somebody else.

Please don't go searching too much until you are more familiar with your illness, unless it is Arthritis Research UK which bsk said about.

take care
xx
reply | back to forum

Date: 15.07.2014
From: PLAD

Subject: Re: Really worried that i shouldn't have come off my meds :(

EXPLORE THE INTERNET AND DO GO BEYOND THE MAINSTREAM SITES. RESEARCH MEANS TO FIND AND DISCOVER.
reply | back to forum

Date: 15.07.2014
From: bsk

Subject: Re: Really worried that i shouldn't have come off my meds :(

That you, Sean?
reply | back to forum

Date: 15.07.2014
From: Floating Daisy

Subject: Re: Really worried that i shouldn't have come off my meds :(

No it is not Sean BSK , it is common sense and not a blinkered and narrow minded perspective.
reply | back to forum

Date: 15.07.2014
From: Sean

Subject: Re: Really worried that i shouldn't have come off my meds :(

No bsk it's not

I always give my name - unlike Bogwart and other anonymous posts!

As it happens though I was looking at the thread and have for a long time wondered about sulphasalazine - and we have discussed on here before.

I have always found it interesting that all that they just say that they don't know how sulphasalazine works - yet they know it is an antibiotic and effects gut bacteria.

You can probably trust the journal of rheumatology -

https://jrheum.com/subscribers/08/08/1477.html

BTW - I am sure Arthritis Research do good work but looking at what research they are funding - they do not appear to be funding any research in to the effect of gut barrier or bacteria. Although they are looking at blood chemistry.

There is a disconnect between treatment and funding and there is a lot of what I consider "orphaned research" - If you take the recent news story with need for new antibiotics as a case in point. We need them - but there is no guaranteed profit so drugs companies are not researching.

The disconnect is analysed in this further open journal of rheumatology paper - a plea to doctors to think beyond their prescribed list of treatments sanctioned by Nice - in the pay of the mega-pharma.

http://www.scirp.org/journal/PaperDownload.aspx?paperID=27948

Even one of my research "heroes" Alessio Fasano is in on the profit - as well as proving that gluten causes intestinal permeability (and is at least part of the autoimmune trigger), he wants to create a pill that will allow millions of genetically susceptible people to eat bread - by preventing the release of a chemical called zonulin. At least he is looking closer for our disease causes rather than finding another novel way to switch off the immune system.

I don't know who PLAD is but I would obviously agree that there are plenty more sites to trust than just AR and this forum.

My own arthritis is in excellent shape at the moment - I am taking less supplements but eating less, low carb and have been using a supplement called Glutamine that has been studied a lot for gut barrier repair. Your doctor won't have heard of it though!

Take care, Sean
reply | back to forum

Date: 16.07.2014
From: bsk

Subject: Re: Really worried that i shouldn't have come off my meds :(

I thought bogwart was his name!

Floating Daisy, hello! We haven't met. Which makes your comment of my blinkered and narrow minded perspective rather bizarre. If you knew me, you'd know I was anything but. But hey! Judge away!

Sean, I thought AR were funding gut and bacteria,I'm sure I've read something but perhaps it was elsewhere. I'm perfectly well aware of and interested in the research. More so than many people on here as I'm running out of drug options and not particularly happy with the ones I've got. I don't want to hijack Danielle's thread with all this, I think she's got enough to contend with coming to terms with having this illness. What I really dislike, and you should know this by now, is people flogging supplements, usually expensive, on here. There are threads for research into gut bacteria and anyone is fully capable to searching through to find the info. Posting endless links on people threads is not fair and derails the thread at a time when they just might need a bit of support. Not everyone wants to trawl through research papers like you, however, I respect that's what you do. But please stop posting all over the place. It's really quite disruptive at times. But maybe that's your agenda? Who knows? I'm sure I don't understand why you are consistently ramming your views down everyone's throats.

Danielle, I'm sorry for this. It's an ongoing problem on here.
reply | back to forum

Date: 16.07.2014
From: Sean

Subject: Re: Really worried that i shouldn't have come off my meds :(

Bsk

1) you asked me a question! And I do not post that often. Did you not want me to reply - or we're you goading
2) floating Daisy's post is not aimed at you - it's a dig at me
3) apart from the "friend" thread this forum is mostly inactive
4) the information about Sulphasalazine is relevant to the thread
5) the things I post on here are trying to inform people - and are far more helpful than telling people constantly to see there doctor and only look at the arthritis research website. Exactly! people might not be able to research themselves.
6) I truly care about people that I strongly feel are not being helped with ALL the facts
7) I hate the supplement posts too
8) my now 2+ year remission is relevant and worth sharing

Danielle I am sorry too that this thread has deteriorated - but I hope you found the information about Sulphasalazine being primarily an antibiotic interesting. I know Julie might also be interested with her pending treatment. Take care
reply | back to forum

Date: 16.07.2014
From: Julie

Subject: Re: Really worried that i shouldn't have come off my meds :(

Poor Danielle - she only came on here for help!!

Maybe a new thread should have been started.

I think it is really sad when these arguments appear, because I personally really appreciate any help from anyone (apart from 'pushers' but I just don't read and pass to next post)

I for one, appreciate what Sean puts on for info, but again, I don't always read it all, some is a bit hard to understand for me anyway, but am grateful for him taking the time.

Bsk, I have noticed a lot of the time you are there first to support even though you must be worried sick yourself about your own meds. I would just like to thank you for being there for me in the past and hope you will be in the future. Just ignore the negative comments they are not warranted.

Sean which bit will I find interesting, do you mean about me going on Minocycline?

As for my advice to Danielle in regard to searching the internet: I am the worlds worst for researching, think its stems from my last job, but all I meant was that until Danielle has the info from doctors etc., and knows the basics (which arthritis website gives) then research deeper because you are more informed and know what bits on internet are not worth taking notice of.
reply | back to forum

 

Add your comments to this topic
Subject:
Please type your comment here:

Your name:
email:

5+4=
(This sum is to help prevent automatic spamming through this page - thank-you)


top

Site design: T - Creative Home | News | Personal Stories | Links | Message Board