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Date: 17.05.2007
From: Lin Wiliams

Subject: Methatrexate Users

Could anyone taking Methatrexate please let me know if you are suffering any side effects, I can't seem to get a reasonable response from my GP at moment.

Many thanks
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Date: 24.05.2007
From: marjorie klokow

Subject: Re: Methatrexate Users

I have been taking it since mid December last year (2006) I take 7.5 m.g. on Thursday at 10.30 a.m. and 5 mg of folic acid next day at the same time (this is to replace loss of vitamins lost by the Methatrexate use). I don't do too much the day I take it as I don't want it to stop working on me. I am 64 yrs of age and it suddenly came up in my head, etc. etc. Too painful to talk about it. I ended up with a stick a few months after - but now I bounce around - I promised myself the day my head stopped hurting so much that I couldn't think straight and my scalp improved due to the psoriatic psoriasis that I would go on a cruise. 10 days later I was away. Anyway - here is the new me. I actually helped someone decorate for 3 weeks, ceiling and all to help someone out. Do you want me to pray for you I am a Prayer Warrior for Born Again Christians - no harm if you don't but I will ask for help on your behalf and believe for you. The Lord never ever fails to answer my prayers, and he sure pointed me in the way of the right place to go for much needed help.

Anyway sorry this is so long.

Bi for now.

Marjorie Klokow
Lancashire

PS. I have lost 2 stone in weight in the past few months but the metho has put me off chocs and crisps and all fatty things - not sorry I needed it.
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Date: 24.05.2007
From: Lin Williams

Subject: Re: Methatrexate Users

Hi Marjorie,

Thank you for responding, I have been on Methatrexate for just over a year now, I started out on 7.5 mg to be taken on a wednesday and take one 5mg folic acid on a friday. Within 3 months my dose of meth was uped to 12.5mg due to really painful flare-ups. I went to see Rheumatoid clinic in March and my dose was uped again to 22.5mg because the flare-ups werent easing. Within 3 weeks, my hair started to fall out and I have lost my fingernails and toenails due to the methatrexate poisoning my body. over the past few weeks I have been reducing my dosage and I am currently down to 17.5mg weekly, thankfully my nails on hands and toes are starting to grow again, but my hair is still falling out, I dont really want to go bold at 42 years of age, but if it happens it does.

Unfortunately due to the methatrexate and steroid injections, I have gained 2 stone in weight and it certainly hasnt put me off of chocies and crisps etc if anything my habit has got worse and being a full time carer for my husband, I cant seem to do the excercise to loose the weight either.

I have prayed lots to take the pain away, but to no avail at the moment, maybe I need to go through this to give me a better understanding of the trials and tribulations that everyone with condition has to endure.

Thanks again for responding its nice to know we are not alone in our suffering.
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Date: 29.05.2008
From: Tracey Hennell

Subject: Re: Methatrexate Users

My Mum was given methatrexate ,i can't rememeber the dosage at the moment, but i can find out,.
Unfortunately we lost our Mum 7 years ago, because of the side effects of it, it caused a condition called 'Lung Fibrosis' which hardens the lungs so they can no longer expand to enable you to breathe,
All i am asking is that if you can get off of methatrexate, i also have a newspaper report on a cororner's inquest about a man that exactly the same thing happenend to, so it's definitely not a one off.
Good Luck to you all.
Tracey
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Date: 29.05.2008
From: Margaret

Subject: Re: Methatrexate Users

Hi Lynn, Can you e-mail me at mags.boyle@talktalk.net. I have been on Methatrexate for over 10 years with no side effects except feeling sick next day.
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Date: 31.05.2008
From: Holly

Subject: Re: Methatrexate Users

Hey Lin, I am 12 i have been on methetrexate for 18 months and have had no side effects at all. I heard that feeling sick is the most common side effect but i haven't had a problem. Do you get injections or tablets? I get injections and that makes me feel sick. That is only the thought of the needle though!
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Date: 10.08.2008
From: tinayates

Subject: Re: Methatrexate Users

hi i was diagnosed with rhumatiod arthritis i have started on methatrexate i have noticed the tirdness and also i have a very sore mouth i also feel very sick tina
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Date: 11.08.2008
From: gemma

Subject: Re: Methatrexate Users

Hello Tina, I've had RA since 2002 and until 2004 I was very seldom pain free. I could barely walk, knees were swollen and painful, as were my feet, and I could no longer straighten out my arms or raise them over my head. Sleeping a whole night through was now a distant memory. My GP was insistent I see a Rheumatologist. My GP and I had discussions about all the medications used to treat this disease. According to him, they could be worse than the disease itself. He felt that I should learn everything about RA as the time was coming when I would have to decide whether I wanted quantity or quality. He was very honest and open about this, very direct in his assessment of the drugs (most of which he felt had very serious side effects) and to this day I am grateful for his openness. He felt I should take a positive role in the decisions made for my disease, as I was the one who had to live with those decisions. I saw the rheumatologist. He took one look at me and wanted to start me on methotrexate (MTX) immediately. He told me that MTX had very few side effects (lies) and I had better get used to the idea that I had RA and was going to have to live with it!!!! I refused the MTX. I went home and researched the causes of this terrible disease, and stumbled across some clinical evidence that there was a connection between RA and infection. The role of mycoplasmas in rheumatoid disease, is very significant. Mycoplasmas,that's what they search for in all the patients, because that bacteria is so small it can live in the nucleus of a cell, and is the culprit that triggers these diseases in many. Being a bacteria, it can be killed with the right antibiotic, and the proven drug of choice is approved, and been around forever... it is used to kill off the microbes hiding in the fluid in the joints. Simple, safe, inexpensive and effective treatment. Treatment goal is to completely eliminate the bacteria and thus remission. I was so intrigued, because the word remission was not even possible. I went back to my GP,and asked for his support.I was so lucky that he was so open minded, he agreed. The antibiotic is taken 3 times a week and it didn't take long before I started to feel something on the antibiotic. The treatment worked for me. My range of motion grew with each passing day and I am my old self again. I make sure to pass what I know on to everyone and anyone I know or don't know, about the wonders of this great treatment. What have you got to lose by trying out an antibiotic, compared to the reality of a future of toxic drugs that can cause a lifetime of problems. Definitely worth looking into and giving it a try! I feel amazing and I still work full-time. My condition is monitored by my GP and one other doctor in the UK, who offers this antibiotic therapy. In severe forms of the disease, he also offers the treatment intravenously in addition to the tablet form.I would urge everyone who feels as I have with this terrible disease, to start this treatment, because it works. Do not dismiss it. I have been there with them saying it does not work. Well I have proved them so wrong as have thousands of others who have tried it. You must and I say again must start this treatment as soon as possible. Even for those that have had this disease for many years, it still works, as I know of people who have had fantastic improvement. There are many of us that have this treatment, some of which have been down the toxic route, and since switching to the antibiotic, have improved dramatically. We are all in this together. I trust that this helps and encourages you to go forward. Please contact me again should you have any further questions, or maybe we can arrange to speak. gfilipe@hotmail.co.uk
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Date: 14.09.2008
From: donna

Subject: Re: Methatrexate Users

Hellow gemma,ive got RA, and have to to drugs education to go on the mexatrexate,i would like to know more about this AP,what is the antibiotic called.thanks. donna
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Date: 22.09.2008
From: darren

Subject: Re: Methatrexate Users

i gemma can you tell me what this drug is called to thanks darren
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Date: 22.09.2008
From: gemma

Subject: Re: Methatrexate Users

Hello Darren (and Donna)

I am unable to name the antibiotic on this forum. This therapy is still gaining ground in this country and is not favoured by the medical profession. I feel that it would be a little irresponsible of me if I did - the forum is open to many thousands of people, many of whom, are so desperate for answers. I do not want a situation where people suddenly rush to their GPs demanding the antibiotic so that they can stop their other medication. To go from one to the other you need support, and you need to be responsible. You cannot just come off the toxic drugs, you need to be weaned off them. You also need to educate yourself about the antibiotic therapy as it needs monitoring. I trust that this helps and encourages you to go forward. I am happy to help you in any way I can. Please email me on gfilipe@hotmail.co.uk
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Date: 04.10.2008
From: candice

Subject: Re: Methatrexate Users

Hi,
I have had RA for 8 years and am now 21. I have been on methotrexate for this whole time- i was on celebrax for a few years, prednisone, plaquenil, salfasalazene, arava and others i cant recall the names of right now. The celebrex had little side effects but also had little effect. The arava was by far the worst.
I am now only on 25mg of Methotrexate weekly. I'm supposed to take folic acid daily but i always forget (i know its bad of me)
My stiffness and pain used to affect me every day. At the start of this year i seemed to feel a lot better, almost NO pain unless i twisted my ankle or something similar. I was feeling so good, i thought i was cured and then it slowly came back. I was on a lower dose of MTX at the time and am now increasing it due to the pain but what i really want is to be drug free. I read before about the antibiotic therapy but i want to know if anyone has gone completely free of all western medicine. I was thinking of trying accupuncture but am leaning towards meditation and yoga. I have pretty strong evidence that my arthririts flare ups are linked to stress. My boyfriend tends to notice it more as he can see the whole picture and link the stress to the time when i flare up. Has anyone stopped their treatment? I spoke to my doctor about it and she recognised my want to stop the medication but advised not to. I want to take control of my own health and life but before stopping it i need something that will work as i still need to be able to work to support myself. Has a change in diet helped anyone? No alcohol? I ride my bike to work daily- 15 km a day and feel this has helped immensly but am too tired to do any other exercise.
Please share your stories...
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Date: 05.10.2008
From: peter

Subject: Re: Methatrexate Users

Hi gemma im new to the forum, ive got RA, im on toxic drugs, their is nothing else that works, so how can you say antibiotics work,ive been reading all the posts, and seen each post you have done to each person says the same, you should"nt mass with peoples heads who have a nasty decease,what kind of a person are you, dont you think if the antibiotics worked the doctors would give them to us.peter
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Date: 05.10.2008
From: kay

Subject: Re: Methatrexate Users

Hi Peter
I have said exactly the same as you in so many words and all i got was a bacl lash of abuse from some people on here,i'm glad someone else is on my side.
I have had RA myself for 3yrs,i'm 42,i've tried a lot of the drugs & now they're thinking of putting me on TNF drugs so i'll wait & see how it goes.
kay
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Date: 05.10.2008
From: peter

Subject: Re: Methatrexate Users

Hi kay, i think she is just looking for custom, its the way she post to everyone the same letter, and asking them to email her, i just dont think its right giveing people false hope, im going to ask my doctor about it, but what is the antibiotic called. peter
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Date: 05.10.2008
From: kay

Subject: Re: Methatrexate Users

HI Peter
i asked my RA doc about this antibiotic therapy treatment & he told me long term it doesn't work that's why they don't use it plus they think it's a bit iffy.I agree with you if it was that briiiant they would put us all on it who suffer with RA.If you go to page 2 on this site & read whats been said on there under the heading antibiotic therapy & see what you think.
kay
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Date: 05.10.2008
From: peter

Subject: Re: Methatrexate Users

Hi kay, i think she is just spamming sites like you said, it should not be allowed, their arepoorly people on here, as i and you know the pain,like you said why not say what the antibiotic is, mex is a presciption drug, for some reason she just wants your email adress, something stinks. peter
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Date: 11.10.2008
From: lisa walker

Subject: Re: Methatrexate Users

my docter wants to prescribe methatrexate i have lupus and the pain is awful in my joints, i have to talk to the nurse first about the pros and cons, i take plaquinel daily can anyone give me some info on this please
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Date: 11.10.2008
From: Irene Paynter

Subject: Re: Methatrexate Users

You know, I'm seriously confused right now.
I have pustular psoriasis,(tut @ spelling)and really sore swollen joints, every joint from my toes to my neck, but mainly in my knees, hips (were I sometimes have to rely on crutches just to move around), wrists, elbows, shoulders and my neck which wrecks me to the point I can't move and feel like chopping my head off at the shoulders. I've had 3 steroid injections in my left shoulder to no effect.
I was prescribed 17.5mg of mtx tablet form in April last yr, I recently went on to the weekly self injection as the tabs made me feel really ill, I can't eat for days after,I get bad headaches, nausea, my hair has gone thinner, my iron levels plummeted and the treatment, although helped a little on my hands, hasn't touched my feet at all, in fact they seem to have worsened. My joints are really playing up most of the time lately.
The up side of the injection is that at least I can eat a bit better, though I still feel ill and my joints feel no better.
I have been told that they want me to raise the level of dosage to 20mg, and if this doesnt help then there is another drug which costs thousands of pounds a yr, but not sure of the name of it. Does anyone else know what this drug would be?
I have been told that my arthritus is 'osteo' no mention of rheumatoid,and is a part of the psoriosis, my white cell count is always quite high and I was once diagnosed with SLE then told I had only 3% of SLE in my system and not to worry, that was in 1996.
I'm a forces wife, my GP at the base med centre was with me from the start last year and knew everything, recently she left to another base, and the one I now have doesn't make me feel I can rely on him confidently or feel he is taking me seriously, which in turn makes me feel really stressed out on top of having a stressful job isn't a good thing and I seem to flare up more under stress.
Would I be better off stopping the treatment altogether and just putting up with the original symptoms and hope for the best or try going for this other treatment instead? I'd really like to know what this other drug is and what effect it has. Im under the Rheumatologist, dermatologist, heamotologist and other ologists at the moment and to be honest I'm tired of it all, does anyone else get that way?
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Date: 12.10.2008
From: Trina

Subject: Re: Methatrexate Users

Hi Irene,

It does sound like Methatrexate isn't working for you, if it was your symptoms wouldn't be like they are. I'm pretty sure the expensive drug that has been mentioned to you will be one of the Anti-TNF drugs - probably Embrel (Etanercept) or Humira (Adalimumab). Have a look at some of the other threads on this forum which mention these (also there's loads of info about these on the Internet go to http://www.arc.org.uk/arthinfo/publist.asp?ProductClassID=2 for more info).

I take Humira (since 2003) and have been great on it. I tried so many drugs over the years and nothing really got my arthritis under control but since I have been on Humira I have really got my life back and have even been able to go back to work and go out for walks!

Sadly, arthritis doesn't usually go away on it's own and can be very disabing if it isn't controlled properly so I don't think coming of your drugs is really a good way to go. If I were you I would read up about the Anti-TNF drugs and next time you talk to your rheumatologist (maybe request an emergency appointment) ask to give them a try. Because they are so expensive they have to be prescribed by a consultant, GPs can't prescribe them. Some people find it hard to get these drugs and it may take a direct approach by you to be successful.

Don't give up and just put up with your pain, there are answers out there for the majority of people, sometimes it just takes a little longer to find the right treatment.

Best of luck - let us know how you get on.
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Date: 14.10.2008
From: vanessa irving

Subject: Re: Methatrexate Users

hey,
i would just like to say, that although many have had a very posotive affects since taking this drug, i did not. i eas only 16 when i was prescribed methotrexate as the pain of my RA was becomign unbearable, i took it once weekly and after every pill i turned a pale grey colour, felt sick, could not eat, endured stomach cramps, my hair began to fall out, my immune system weakened, and i felt worse. my joints were actually more swollen when on this drug than they were before. obviously it's your own choice, and the decision is up to you as an individual. only time will tell whether or not this drug can have some kind of posotive effect, bu seriously dont ignore the side effects and dont stay on the drug for too long, it can cause serious long term side effects, such as lymphona, and it will fuck up you liver and other organs at the same time!

i hope this helped babe

peace and love
Vanessa x
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Date: 15.10.2008
From: worried mom

Subject: Re: Methatrexate Users

my son is 17 and got psorisis for the first time and with in two weeks his knees were swollen. I took him to Derm and his PCP who refered us to a Rheum Dr. He was on Naproxen for 1 month with not much relief his knuckle them became swollen. He was started on mexatrexate injections, but was recommended to still take the oral Naproxen due to mexatrexate not expected to take effect fo 4-6 weeks. He also started physical therarpy which helped with joint stiffness. After the second shot he was had much relief in his knees but knuckle still swollen. He also takes Folic acid daily. It has been helpful to read this site to hear other peoples stories. Is there anyone who used this and felt relief and has had a good experience with this medication? I do see that some people have had some bad experiences, as a worried mom i am hoping that this drug has been a "fix" for some people.
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Date: 16.10.2008
From: Richie Green

Subject: Re: Methatrexate Users

I take 20mg (8 tablets) of methotrexate a week for RA. The side effects have been minimal but since upping the dosage to 20mg I seem suffer an increase in pain and stiffness through the evening/night and the following morning after taking them which wears off back to the normal level as the day progresses. Hope this helps.
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Date: 26.10.2008
From: Clare

Subject: Re: Methatrexate Users

I have a 6 year old son who has been diagnosed with JIA. He has had two procedures with the steroid injections into the joints. These have been great in the short term. He has now been prescribed Methatrexate, to take once a week followed by the Folic acid. As his mum I am very concerned, and reading a number of comments I am further concerned. Does the sickness feeling become worse with each doseage? or if you sail through the first dose, does this mean you possibly won't have the side effects? I would love to hear from someone who has a child as young as mine as I am still in the dark about all of this.
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Date: 03.11.2008
From: Lisa

Subject: Re: Methatrexate Users

I have just found this forum and have read everyones comments with great interest and a feeling of dread. I have been waiting for the 'OK' to start on Methatrexate, post chest x-ray results and have been looking forward to feeling better once I start. Now I'm not too sure and feel even more scared than before. Is there anyone out there that every sits here thinking 'whats the point?' - if all I'm ever going to feel now is tired and in pain? Now you are telling me my hair and nails may fall out and the pain won't be any less. God I'm scared.
I have the best husband in the world who is the most supportive person you could ever dream of but I sometimes wish I could talk to someone who knows how it feels.
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Date: 03.11.2008
From: christine

Subject: Re: Methatrexate Users

Hi lisa,i was worse on the mex sorry to say, ive just started on the anti tnf drug, its called humiria, and up to know i feel lots better they still want me to take a small dose of the mex, just 5mls they say it works better with the humiria, but i really dont want to take it,ive had to fail all the standard drugs to get the good stuff, ive been in pain for the last 2yrs, the side affects are frightning,but what can you do,i couldnt even get out of bed, and i couldnt carry on like that, it just gets me mad to think why couldnt they just give me the good stuff in the begining, well it all comes down to money, hope this helps you, but every one is different it may work for you. christine.
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Date: 06.11.2008
From: pete

Subject: Re: Methatrexate Users

hi there, i was on methotrexate for about 5 years an it worked well for most of it but as you up the dose the side effects get worse, mine were very bad upset stomache and mouth ulcers of which covered the whole of my mouth, think the upset stomache is also due to having been on non steroinals for 30 years tho,i have a friend tho that swears by it and has been on it for 15 years he is on 20mg a week and only occasionaly gets the odd mouth ulcer, unfotunately all of these drugs are trial and error and to find the drug that suits you can be very long winded,i wish you all luck, i know its hard but try and keep smiling, pete
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Date: 07.11.2008
From: Lisa

Subject: Re: Methatrexate Users

I really appreciate your responses Christine & Pete and promise to try and keep smiling! Decided to stop being the victim on Wednesday and went and ran 10km to show this old body that its got a fight on its hands if it thinks I'm giving up that easy! Maybe it would do us all some good if we started posting all the positive days we have on this forum instead of only noting the bad ones?? Thanks again LoL Lisa
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Date: 07.11.2008
From: lynh

Subject: Re: Methatrexate Users

I was on methotrexate for years, with no side effects and with variable amounts of reduction of problems.

Try it Lisa, I really hope it works for you. If not make your rheumy try another. As Pete says it is trial and error, everyone reacts differently.

Good luck and you're are definitely right keep active and positive.
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Date: 09.11.2008
From: Diane

Subject: Re: Methatrexate Users

I was diagnosed with RA and Lupus (Rupus), a year and a half ago. I started with the pill form of Mexatrexate but had a hard time tolerating the side effects so opted for the injection. I still didn't feel up to par, so was finally approved by my insurance company after a year of suffering to take Humira. After a major depression, I finally had to go on disability, no longer able to cope with a physically and stress related work environment. I am now recovering from the nervous breakdown with Celexa and therapy. The RA pain has subsided, but I still have to deal with fatigue and migraines. I am noticing that my hair is thinning and losing it's once baby fine shine!
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Date: 10.11.2008
From: rick crowe

Subject: Re: Methatrexate Users

I took it for 5 years and it increased the scarring on my liver. So I stopped it and 2 operations later I'm on Humira which is starting to work now
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Date: 17.11.2008
From: Lorraine

Subject: Re: Methatrexate Users

I have been on Salazophyren for 25 years and mathetrexate 20mg for at least 15. I am lucky I have no side affects and go to keep fit twice a week. The extreme tiredness is a sympton of RA.I would not be able to live with RA if it wasn't for these drugs. If you stop taking them you are allowing your joints to be permanately damaged,Lorraine
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Date: 23.11.2008
From: marshian

Subject: Re: Methatrexate Users

hi, i have been searching through websites as my father is currently in a very serious condition after taking a mixture of three RA drugs, two at the same time. one was meth the other was plaquenil and hvnt got the third. when he was admitted to hospital two weeks ago he have no bone marrow and is blood levels were dangerously low. since entering hospital he has developed a fungi in his lung and pneumonia his appetite went but has now returened however he is 'away with the fairies' now -as they say-. steroids and all the antibiotics are currently not working and the furture is not bright. my father was a sufferer of RA and was persuaded to try these drugs...the GP took him off once but the RA consultant put him back on?? i am really looking for anything positive that may be of help as the blood consultants who are looking after him are running out of ideas
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Date: 23.11.2008
From: christine

Subject: Re: Methatrexate Users

hi marshian, im sorry to here that, has your dad ever been on the anti tnf drugs, they are a biological drug, culd they try him on this. christine.
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Date: 29.11.2008
From: Claudine

Subject: Re: Methatrexate Users

Hello Lisa, I am in exactly the same position as you. I have just been diagnosed with RA and I am expecting an appointment shortly to see a Drug Monitoring Nurse to explain my diary for Methotrexate as long as xrays and blood tests come back ok. I have just turned 40 and hardly ever take tablets, even asprin, so the thought of becoming dependant long term on drugs is a very scary thought. It seems that we end of having to decide which is the lesser of two evils, putting up with the symptons of RA or the possible side effects of the drugs that are susposed to slow down the progession of RA and improve our quality of life. I was given a steroid injection two days ago and have already seen and felt an improvement so I will be interested to hear how you get on and which way you decide to go. Good luck.
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Date: 01.12.2008
From: Lisa

Subject: Re: Methatrexate Users

Claudine, it feels really good to hear someone else is going through this at the same time as me, although I obviously wouldn't wish it on anyone. I have been taking mex now for 4 weeks, 10mg per week and have had no problems what so ever. I too had a steriod injection, 4 weeks ago, but I'm only now starting to feel like the old me again. Whether this is the steriod or the mex I neither know or care! I'm now waiting to hear whether I need to up the dose to 12.5mg per week based on my latest bloods - will let you know what happens. In the meantime I've been told I must stop focussing on all the POSSIBLE negative things that MIGHT happen to me in the future and get my life back on track.. Easier said than done, I feel - but I ran a 10K race on Brighton sea front last weekend, not bad for a 42 year old, overweight, wine loving Rheumy!!!! Keep in touch and try not to worry (says Lisa who spends all her time fretting!)
xxx
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Date: 17.12.2008
From: Claudine

Subject: Re: Methatrexate Users

Hello Lisa, sorry I did not reply earlier, a very busy time of year, not to mention a hectic 10 year old to try and keep up with. I am so pleased to hear that you are doing well and I think the advice to focus on the positive as opposed to the possible negative is spot on but I know myself this is easier said than done! I am now on my second week of mex and apart from a few mouth ulcers and blotches on my arms, I seem to be tolerating it pretty well. Go for blood tests next week as well as increasing dose to 12.5mg per week. Well done on your 10K run, you are now putting me to shame! My last run was the Great South Run back in 2006 so maybe I need to blow the dust off my running shoes in the New Year. Hope all continues to go well. Xxx
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Date: 18.12.2008
From: brenda andersen

Subject: Re: Methatrexate Users

Im so glad that I read your story for after I had dental work done replacing old fillings and a crown I was diagnois with psoratic arthritis. I was a healthy 39 year old and Bam I can't get out of the bed one morning with fluid on my knees and horrible joint pain. I dont have a skin disease besides dry elbows. I dont have sores or patches any where else. I will alway relate my illness with the dental work. I would love to know the exact antibotic for I will take it to my GP and also can you take the mextrexate while doing the antibotic theorpy. Thanks so much Bren
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Date: 22.12.2008
From: sinead

Subject: Re: Methatrexate Users

Hi i'm suffering very badly with mouth ulcers and sore gums and an enflammed tongue - so sore it hurts all the time. Specialist prescriped corlan pellats and cordisal mouthwash but neither working. hurts so much i can't sleep at night and am constantly biting my tongue. anyone any problems like that or solutions? I am on 20ml of methatrexate and one folic acid weekly and am thinking of giving it up. Am on b12 injections for the fatigue also.
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Date: 23.12.2008
From: Claudine

Subject: Re: Methatrexate Users

Hello Sinead, I was advised by my Dmards Nurse to increase my intake of folic acid if required, to help alleviate any side effects. I was told that I could take 5mg of folic acid a day apart from the day that I take the Mex. It may be worth having a chat with your Dmards Nurse about giving that a try before giving up with the mex. Hope that helps.
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Date: 24.12.2008
From: Lisa

Subject: Re: Methatrexate Users

Claudine - thought I'd check in with an update - now on 20mg per week but only 5mg folic once a week. Having no problems at all and feel so much better so starting to feel that maybe I'm going to be one of the lucky ones that finds the right tablets first time round. Going to try for a 10 mile next year (1/2 marathon seems like a really silly idea!) so make sure you get your trainers on so we can swop muscle injury stories instead for a change!
MERRY CHRISTMAS EVERYONE.......XXX
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Date: 05.01.2009
From: sinead

Subject: Re: Methatrexate Users

hi i'm getting sore mouth also due to methatrexate its causing me huge problems, have tried everything ie mouthwashes, steriod rinses, anti inflamaties, corlan pellets, bonjella, ambesol, i am at my wits end. I am on b12 injections for the tiredness. how are you doin now?
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Date: 05.01.2009
From: sinead

Subject: Re: Methatrexate Users

hi claudine thank for that i will ring my specialist and suggest that, is the folic acid on prescription? the one i am is as its stronger than what you can buy over the counter.
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Date: 05.01.2009
From: sinead

Subject: Re: Methatrexate Users

hi

Yeah the injection they are talking about is enbrel i've heard great things about it and am starting it soon, i've been on methatrexate for almost a year and even though its working and i'm on the max dose i still have the odd flare up mainly in my feet, one of my toes has gone crooked so i am going in for op to get it straightened then in start enbrel. the side effects scary but every drug has side effects and you won't know until you try it - best of luck, email me if you want, i have psoraisis arthritus.
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Date: 05.01.2009
From: sinead

Subject: Re: Methatrexate Users

hi

Yeah the injection they are talking about is enbrel i've heard great things about it and am starting it soon, i've been on methatrexate for almost a year and even though its working and i'm on the max dose i still have the odd flare up mainly in my feet, one of my toes has gone crooked so i am going in for op to get it straightened then in start enbrel. the side effects scary but every drug has side effects and you won't know until you try it - best of luck, email me if you want, i have psoraisis arthritus.
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Date: 05.01.2009
From: sinead

Subject: Re: Methatrexate Users

thanks for that i'll let you know how i get on
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Date: 06.01.2009
From: Claudine

Subject: Re: Methatrexate Users

Hi, yes the Folic Acid is on prescription.I spoke to my Dmards Nurse yesterday because up until New Years Day was doing really well but since then have had a constant headache, nausea, very itchy hands and feet, no appetite and severe tiredness. The steroid injection I had at the end of November is now wearing off so am also suffering now with my joints again. Have been told increase intake of Folic Acid and not to increase my dose of Mex yesterday which I was supposed to do. Had blood tests done yesterday so will hear in a couple of days if that shows up anything. Other than that it is just a case of sticking with the Mex at the moment, especially as the benefits of the steroid injection is now wearing off. Keep in touch with how you are getting on. Happy New Year. X
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Date: 19.01.2009
From: Diane

Subject: Re: Methatrexate Users

My question to Tina is, if the treatment is so great why can't you name it. What do we look like going to our doctors with no name or proper information about this antibiotic therapy. One would need more information. I would want to try something different other then all this medicines. Please provide more information.
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Date: 20.01.2009
From: Waz

Subject: Re: Methatrexate Users

Hi Diane

I think its Gemma and not Tina you are reffering to.
My wife suffers from RA. We contacted Gemma and spoke to her about the antibiotic therapy at length and we also did our own research on the internet.
We are glad we spoke to Gemma an explored the option. My wife has been on the antibiotic therapy for 3 months and her condition has improved quite a bit.

Gemma is a great lady and is just trying to help.

Best thing to do is look into it yourself and make your own decisions. Check out the below website for more info about this therapy.
www.roadback.org

Take care
Waz
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Date: 23.01.2009
From: Siobhan Perner

Subject: Re: Methatrexate Users

Hi All

My name is Siobhan and I have had RA for the past 20 years, have had both knees and one hip replaced. My RA is cronic but I still insist on working, thank god I am able. Anyway I have been on Meth and for the past 10 years with some, not many side effects, my hair has thinned out, I am on Steroids also, anyway the meth has stopped working so the past 2 yrs I have been like a lab rat trying the various TNF all of whic have not worked for me. Humira was great for the first 3 months then I made my own antibodies against, Embrel was alergic to, came out covered in water blisters, then I tried another which I can't remember the name of, it was done by infusion and a half hour into the infussion I had an alergic reqction, so there is a new on that has just come out called Tocilizumab (actemra in U.S) so I will be starting than in the next 1 - 2 months. My point is that it is all trial and error to find what works for you. And never give up the fight no matter what happens

God bless all ........Siobhan
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Date: 26.01.2009
From: Trayce

Subject: Re: Methatrexate Users

Regarding mouth sores-my dentist told me to mix equal parts pepto bismol and liquid benadryl and apply with qtip to sore. This has been helpful to me and also several friends. I'm recently dx with Ps arthritis and I'm considering methatrexate. Thanks to all of you who have contirbuted your experiences.
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Date: 28.01.2009
From: Kristin

Subject: Re: Methatrexate Users

I have been on Methatrexate since 2006 and take 20mg on Friday just before I go to sleep. I take Folic Acid 6 days a week ( not on Friday). I somedays have hairloss but nothing to talk about. It is necessary to take Folic Acid. I also take other vitamin. I'm also on Remicade.

I have had RA for about 10 years now. I live in Iceland.
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Date: 18.02.2009
From: angela collins

Subject: Re: Methatrexate Users

I have just started to take MTX in the past two weeks and feel already extremely tired. Sleeping almost 11hrs each night and this just doesn't feel enough - any advice or should I expect this to pass
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Date: 27.02.2009
From: Vicky

Subject: Re: Methatrexate Users

Hi Gemma,

My 3 year old daughter has been on methatrexate for 1 year, and the pain she is in is so unbearable for me to watch, the drs now want to put her on enbrel, which I refuse.
Could you please give me the name of the antibiotic.I agree with what you say she actualy got jia after an infection was not treated by a hospital!!!!!!
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Date: 27.02.2009
From: Jill

Subject: Re: Methatrexate Users

Hi Lin, Im on Methtrexate 17.5 weekly, so a high dose, havnt had any side affects to speak of, however, I have had a lot of cold sores lately, im also on Enbrel, which really compromises my health, as you know, the Dmards are toxic meds, and I guess we must expect some slight side affects....Imagine how you might be IF you wernt allowed the Methtrexate? thas how I look at any side affects, stay Positive

Love Jill x
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Date: 04.03.2009
From: Jeanette Anderson

Subject: Re: Methatrexate Users

I have been using the drug for over a year now and feel really sick and a splitting sore head for a good day after I have taken them, It keeps my arthritis at bay but I trully wish there was
an allternative> interested how you feel it affects you take care Jeanette
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Date: 05.03.2009
From: Gemma

Subject: Re: Methatrexate Users

Hi Vicky,
I am not sure if the antibiotic therapy has ever been used on children, especially this young, but then why not? There is only one doctor in the UK using the antibiotic therapy, and I will be seeing him next Tuesday, so I will make enquiries. Please contact me via my email address (see my previous posting) and I will get back to you.
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Date: 16.03.2009
From: liz

Subject: Re: Methatrexate Users

Hi Gemma, I read your artical today and as an artheritis sufferer for 34 years I find it amazing I have not heard of this. I have been on MTX for 5 years and am worried about it.
I am surprised you did not name this drug? was there a reason for this? Could you please tell me the name, and the name of the doctor who uses it.
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Date: 16.03.2009
From: Jill

Subject: Re: Methatrexate Users

Hi Angela

Im on Methtrexate and enbrell I dont sleep, barely get 2 hours thru... its on and off alnight long, infact last night, I didnt fall asleep until 4.30 and went to bed at ten, im shattered! I wish i could sleep, maybe you should set your alarm clock and get up say after 8 hours, maybe your getting too much and making you feel like you do.... Dont you end up in agony?sleeping so long? i toss and turn all night due to pain!

Jill
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Date: 16.03.2009
From: Girlwonder (fed up)

Subject: Re: Methatrexate Users

i still havnt followed the advice and started my methatrexate and i know i need to do something soon as its getting worse but i just read so many negative things and something is stopping me from taking these pills..im worried, not sure why but my instincts are to not take them :(
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Date: 16.03.2009
From: Jill

Subject: Re: Methatrexate Users

Just read this message of yours. Have u got R.A.?? I really must say to you, that I had your concerns also, the specialists will look after you so good, regular Blood tests etc... Im on Methtrexate, And Enbrel injections, most people that I have spoken to say that they feel better for taking them, I use to talk to a forum in USA(they all said best thing they did was taking those Meds)

Y dont you give them a go, takes at least three months remember to get into your system, so give them some time to work, and see how they affect you? sounds a silly question, but how bad are your joints etc? pain etc? obviously the docs say you can go on them , so you must be in lots discomfort etc,and as you know there are very strict Regulations who are allowed them etc...

I had massive worries about taking these meds, i was so scared, But my condition got so bad, I had no choice, and I actually looked forward to going on the Enbrel, they work well together, I havnt had any side effects, except Dental probs... I have had colds, but no more than anyone else, I hate to think how I would feel if I wasnt on my Meds... also the other reason for taking the Meds, is that your body doesnt get worse, i.e. Needing hip replacements, etc, I truly beleive that if I had started my meds years ago, I would not have had all the Corrective surgery that I have had so far(7 ops).

Im currently awaiting another spine Op.... due to Degenerative disc disease(I also have Reiters diseas
e that Eats at the soft tissues, that is still active in me, regardless of the Meds, but beleive me, I know I would be so much worse off!!

Chin Up, think Positive Love Jill
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Date: 19.03.2009
From: angela collins

Subject: Re: Methatrexate Users

Well Jill
things have now changed a bit gone from vast amounts of sleep to now tossing and turning. Don''t feel particularly well on MTX now up to 15mgs - actually nearly passed out yesterday at a funeral ( day of administration ), had three drinks and honestly had never felt like thhat in my life. Do feel a bit of pain relief and also started a new therapy called GANZ Rays on my scalp so lots going on. Thanks for your reply
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Date: 19.03.2009
From: Jill

Subject: Re: Methatrexate Users

Poor thing (((hugs 4 u))) Yea drinking whilst on Methtrex isnt good, makes me ill also.... let us know how your GANZ rays goes...But im being ignornat, what is that for?

Love jill
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Date: 29.03.2009
From: angela collins

Subject: Re: Methatrexate Users

Hi Jill

Ganz ( or gamma ) as I like to refer to it is a treatment where X Rays are delivered to my whole scalp via a machine. Your hair is sectioned and the Ray penetrates about 2mm of your scalp. It is supposed to be very helpful and can in about 6-8 treatments cure stubborn severe psoraisis on scalp and hands. Obvious side effects , increased skin cancer etc. I look forward to being able to brush my hair again without wondering how bad the flake is . So with my radioactive head / arthritic joints / wine rejecting liver I am on top form, and look forward to the future....
Angela
x
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Date: 01.04.2009
From: Jill

Subject: Re: Methatrexate Users

Wow amazing what they can do... stay well Angela
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Date: 07.04.2009
From: Scanlon

Subject: Re: Methatrexate Users

Hi. I'm on methotrexate and find it very helpful. I've only been on it a couple of months but I've noticed the difference. It takes 3-6 months for the medicine to take full effect. I take 25mg every Monday at 12pm, then on Tuesday, Wednesday and Thursday I take Folic Acid after breakfast. I also take a chewable formn of Calcium with D3 every day. The Calcium and Folic Acid are to help the liver and kidney function. Also most people are prone to mouth ulsers with the methotrexate. The folic Acid also combats this. I've had no real side effects. I feel tired on the Sunday night and Monday morning, probably due to it being a week since the last dose. I've also had kidney and urinary tract infections and a constant sore throat. However, the rheumatist specialist said this was due to my body being run down because of the inflamation I'm suffering. My immune system is trying to cope with the inflamation and letting the rest of my immune system run down. That will go though when the inflamation stops. Here's to the next four months of fighting the inflamation. Also, you need to be very careful with alcohol intake with this medicine. I'm allowed 4 units a week but never more than 2 in the same night or 4 in two consecutive days.
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Date: 08.04.2009
From: John Fellows

Subject: Re: Methatrexate Users

I have been on Methotrexate for 2 months now 7.5 so far I have not feltany benefits. I have been sleeping in a chair every night since last May as I cannot lie down. I am 75 and was struck down with arthritis at the age of 40 so have tried virtually everything over the years but nothing has really helped. I live on Anadin Extra every day for the pain, every 4 hours which isnt good but I cannot do without them. I do wonder how long I should give this drug to start working, is everyone different ? My Doctor told me it takes 4 months has anyone else had to wait this long ? I dont have any side affects so far.
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Date: 15.04.2009
From: robert peter bridge

Subject: Re: Methatrexate Users

hello my name is bob bridge .i was on methotrexate in injection form for 18months though it did ease my athritis considerably unknown to me it was infecting my colon which gave me colitis and at exmas 08 i lost 17lb in weight and was rushed to hospital where they did a colonoscopy and discovered the colitis which they told me was from the methotrexate. as soon as i stopped the injections i recovered quickly , but its taken some time for the colitis to clear, but i am putting the weight back on now .
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Date: 29.04.2009
From: Tanya

Subject: Re: Methatrexate Users

Hi, I have psoriatic arthritis, and secondary osteo.
I was diagnosed at the age of 14, i am now coming up to 49. my skin has been clear since i was 16, with only one small outbreak 9 years ago.
i have been on methotrexate for about 11 years now. i started low (7.5) but now take 20mg per week. I also take my folic acid 5mg the day before my tablets, so am intrigued to see people on here taking it after their methotrexate dose. i was told it should be taken before as methotrexate strips FA from the body.
i am also on anti TNF (humira) which i self inject once a fortnight. My symptoms are- i find it hard to get going in a morning, feel sluggish. headaches every day, can't loose weight, but rarely feel really hungry, and rarely 'fancy' any particular food. Mainly i just eat so i can take the super pain killers i take, for my secondary osteo, which is so bad in my knees. i don't drink too much, because, again i just don't fancy it. i feel tired most of the time. I am pretty fed up at the moment, because although my PA is being superbly controlled, i am in pain with the osteo, and am facing the prospect of 2 new knees.
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Date: 28.05.2009
From: Blogger

Subject: Re: Methatrexate Users

I have been on sulfasalisine 2g a day for the last 5 years the same horror stories were posted regarding this DMARD at least give it 6 months to let your body aclimatise to the intrusion it faces. I drink between 15-25 pint of 5% beer a week.

My rheumatologist has suggested MTX is there any MTX users who have the same drinking habits and what is your experience?
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Date: 29.05.2009
From: Jill

Subject: Re: Methatrexate Users

Hi Tanya


((hugs for u)) but once u get your new Knees u will feel fabulous again, I want new Knees, they r reluctant at the mo, becosa I have Infla Arth, they think it will get better, but it never does, had athroscopies on them over 6 years ago, found i have no cartlege, at fron of the Knee, since all that, my Knees caps are twisted they say, Synovitis in them constantly, I have had lots corrective surgeries, both shoulders, two hip operations, and spine of, due another spine op prob after xmas(discs disapperared) thatsny they are reluctant to sort my knees out, due to fact I guess that ive had so much surgery in the recent past, My gp says one thing at a time, LOL, then ther is always something else that Plagues me.... anyway, rambling here, Look forward to Painfree Knees, Next year I will put the pressure on my surgeon to give me Two fab painfree New Knees!!

Heard a lot of good after the op, so good luck
let us know how u get on please

Love Jill x
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Date: 30.05.2009
From: Max

Subject: Re: RA

had a bad pain to my hand and wrist in the middle of the night 3 months ago, I am currentkly taking cortison and ibuprofen but is not doing much.
I am waiting to see a Rheumatologist in order to have a diagnoses I am currently suffering with a lot pain located all over my body not only in my joints but also my muscle and tendons, I feel also tired, with cognitive functions compromise and sleep problems.

All my blood tests including the RF were positive.

I have noticed that the available drugs are full of serious side-effects

I do not really what to do

please if you have similar experience get in touch
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Date: 30.05.2009
From: J

Subject: Re: Methatrexate Users

Hi Max, I get Joint pain due to Inflam Arthritis and other conditions relted to Arthritis, I also have Reiters Disease, and the disease attacks my tendons, and all soft tissue tendon pain is terrible, tiredness goes with my illness, and sleep problems due to the DMARDS etc, the Immune suppressants, they make us feel tired!...the Drugs u mention, I doubt u will be offered them straight away, as the Rhumatologist waits a good while to see if your pain and problems subside, often they do, but if they dont, then the 2nd time u see him, thats when they begin to really listen, assuming the symptoms are as bad as the first time.... some people have just one flare up, and they r ok for years, but if your symptoms carry on, they will eventually offer u the Meds u talk of.....I wouldnt worry about the side effects becos they r worth having, I cant imagine how I would be without them, far worse off id say!

goood luck
let us know how u get on

J
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Date: 01.06.2009
From: Blogger

Subject: Re: Methatrexate Users

looks like you have a bacterial infection not RA then
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Date: 02.06.2009
From: Jill

Subject: Re: Methatrexate Users

Blogger regards that stupid comment u left me?

lets get summat str8....I DO NOT HAVE A BACTERIAL INFECTION!... get your facts sorted!... I have seron neg Arth.,... plus I have Reiters, due to food poisoning way back in 1987, Reiters can affect people in different ways, mines chronic, left me with inflamed tendons etc, all soft tissue, and Joint probs.... R U a Rhumatologist? no dont think u r, I have had 7 Corrective surgeries, due to arthritis... so dont say its a bacterial infection and Not R..A. What do u know? blimey u sound like a grumpy old know it all!! or in other words a miserable old Git, Keep your nasty comments to yourself, becos no one cares what u think!
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Date: 02.06.2009
From: Jill

Subject: Re: Methatrexate Users

Also Mr Blogger....People with Bacterial infections dont frigging go on Toxic meds like Enbrel amd methtrexate....GrrrrPeople like u make me want to scream....theres enuff people like u on the outside dont need your misguided quack chat in here!!!
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Date: 02.06.2009
From: Blogger

Subject: Re: Methatrexate Users

Dear Jill check the comments it seems you are referring to yourself.:-)
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Date: 02.06.2009
From: BRIAN

Subject: Re: Methatrexate Users

Jill no need to be offensive in any way, we all apparently suffer to some extent so try to conduct an uplifting message rather than an offensive one, In the meantime I regret your discomfort and I hope that you may become more tolerant of those individuals who perhaps are having more difficulty in their own particular illness. Good Luck
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Date: 03.06.2009
From: christine

Subject: Re: Methatrexate Users

message for blogger and brian just read your posts to jill, i would not wish this horrible illness on my worse enamey, so dont take the mick out of us, hope you can live with your selfs, and jill dont take there bate, there sad people. christine.
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Date: 03.06.2009
From: Jill

Subject: Re: Methatrexate Users

Hi Christine....thanks....cant stand boring old men, with their miserble self righteous comments... thanks for support...what pisses me offf is Blogger saying I have baterial infection, and NOT what Ive been diagnosed with... LOL ftw has he got I wonder ? Man flu prob
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Date: 03.06.2009
From: Jill

Subject: Re: Methatrexate Users

Brian Mind your own miserable business ok.... I got peed offf with Blogger becos He TOLD me I have Bacterial infection....I know what I have, and its not what he said.... his comments are Blunt... so I told him what I thought....cant stand big gobs that tell others what they have, that is nt waht this forum is for....If u take the time to look at any of my messages to the rest of us, Ive always been very supportive, and Im probably the person u see always try and offer others support, Blog wasnt doing that! I am very tolerant , but not when I get a person who knows nothing about me, bluntly telling me I have Bacterial infection and Not R.A. I Always give an Uplifting message of support, go back and read the last few months worth of my Input!!
so basically I dont suffer fools gladly, and for the record Brian, im like the rest of us on here, not always coping, and cant stand idiots that are offensive, too right ¦I was offensive to Blog, he deserved it ok!!
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Date: 03.06.2009
From: BLOGGER

Subject: Re: Methatrexate Users

You are at it again it was only an opinion.

Perhaps this may cheer you

The Mp's expenses could have helped research into your condition had it not been spent on toilet seats and duck houses
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Date: 03.06.2009
From: Jill

Subject: Re: Methatrexate Users

LOL now that is funny...guess u do have a dry sense of humour...Ok I forgive you.... Now smile and be nice
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Date: 03.06.2009
From: BLOGGER

Subject: Re: Methatrexate Users

:-) Has anyone tried cycling some say that helps
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Date: 03.06.2009
From: Jill

Subject: Re: Methatrexate Users

LOL...My better half bought me a gorjus mountain bike, lots different gears etc, hmmm used it twice I think, enjoyed it thouroughly, then the pain began next day! two hip ops later, havnt used it, but I love the freedom it gives, becos I live near the sea and its great cycling along the promenade......Mind u, I prefer to try Wine, that helps : )
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Date: 03.06.2009
From: christine

Subject: Re: Methatrexate Users

hi blogger, can i ask have you got a disability, R,A,?,christine.
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Date: 04.06.2009
From: BLOGGER

Subject: Re: Methatrexate Users

Yes RA can hardly walk use the bike as a zimmer painful next day but feel better and takes Ur mind of it dodging the potholes poor roads due to expenses of MP's

Had 200ml fluid out of each knee and steroid pumped in 3 weeks ago improvement for a short while.

Plus steroid in the lower back as and when tablet form when .

Xpect U think I am a fake had the problem 15 year

MIND over MATTER I know its hard but depression is far worse
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Date: 06.06.2009
From: christine

Subject: Re: Methatrexate Users

No didnt think for one minute you were fake,just wondered what was wrong with yuo, i have R.A, so yuo will know the pain, we can relate to each other, ive had my knees drained 6 times, and more steroids than a horse. christine
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Date: 07.06.2009
From: Blogger

Subject: Re: Methatrexate Users

Hi Christine

Hope they dont start thinking end of life programme I have had quite a few fluid drains in several areas of the anatomy.

Thats what they do with horses LOL :-)
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Date: 07.06.2009
From: Jill

Subject: Re: Methatrexate Users

Ok im ignorant on fluid in the knees and draining of them etc.....does it mean that ultimately that u will need New Knees? I have Synovial fluid around most joints, my knees hurt bad, due to lack of cartledge, twisted patella, and inflamation9synovial fluid) they said....is it the Synovial fluid that gets drained?? mine dont swell that much thank god, but the pain can be terrible if I walk more than quart of a mile
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Date: 07.06.2009
From: jill

Subject: Re: Methatrexate Users

Hi Blogger, just being Nosy...how Young are u? and where about do u reside? im in East Sussex
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Date: 07.06.2009
From: Blogger

Subject: Re: Methatrexate Users

Synovial fluid that gets drained yes and obviosly makes it dificult to bend the knee, joint is stage 3 degeneration after 4 becomes a replacement.

Up North 50's yorkshire
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Date: 07.06.2009
From: Jill (nutmagnet)

Subject: Re: Methatrexate Users

im 40 sumat... hey I shlda guest u were from Yorkyland :)
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Date: 07.06.2009
From: Jill

Subject: Re: Methatrexate Users

BLOGGS what stage is your joint at ? they never told me where mine is...but will ask next time I c my surgeon...he did my knees(just arthroscopies) and Spine op(Dynesys) 2003...but gotta have another spine op as yet another disc has been eaten away! fab huh
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Date: 07.06.2009
From: Blogger

Subject: Re: Methatrexate Users

http://www.emedicinehealth.com/rheumatoid_arthritis/page6_em.htm

Jill

Have a look at the above website for category staging
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Date: 08.06.2009
From: Jill

Subject: Re: Methatrexate Users

Thanks for that Blogger, very helpful site...seems im stage 3 and stage 4 of rhummy opinion, cos I cant work
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Date: 08.06.2009
From: Jill

Subject: Re: Methatrexate Users

Thanks for that Blogger, very helpful site...seems im stage 3 and stage 4 of rhummy opinion, cos I cant work
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Date: 08.06.2009
From: Blogger

Subject: Re: Methatrexate Users

sorry about that Jill I had to finish last year so I must be the same stage but it is an american website as you probably noticed we may hav different staging.

Its very frustrating when people do not understand how RA can affect people
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Date: 08.06.2009
From: Jill

Subject: Re: Methatrexate Users

Very tru Bloggs, each day can be so different from any other day, I do not now make commitments to friends, i.e. social life, going out etc...becos I always end up cancelling! I had to cancel my sister last week, she didnt understand so much, oh well, guess they just dont understand, its the Fatigue that I hate, becos that happens to me even if Im having a good day, makes me sick!!
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Date: 10.06.2009
From: Anna

Subject: Re: Methatrexate Users

I Have RA and Lupas I was in admin for 19 years until recently as I can no longer do it due to my symptoms, Joint pains, tiredness, lack of concentration, and forgetfullnss (you know what it's like!) I have had a career change doing something a little less repetative (and taking a big drop in earning potential) as I feel the career choices are taken away from me. When I have discussed the difficulty of employment with my GP and RA consultant, they have ignored me completely leaving me feeling helpless and desparate and close to breaking down. I am trying to stay positive about the future but its difficult, I am in my 30s, on plaquenil and about to go on Metha (which I am very scared about after reading the messages). Does anyone else have problems with employment. I feel very limited in choice, every day is a struggle at the moment.
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Date: 11.06.2009
From: Jill

Subject: Re: Methatrexate Users

Hi Anna

PLeaseeeeee dont feel worried about taking Methtrexate, the side affects seem only small from what ive read, i just feel a bit sick for mb a day or so after taking it, I do get extra tired after taking it, but that is all, the benefits are huge compared to the side affects....so pls dont be worried, im on Methtrexate as well as the Injections, so Im getting a double dose of compromised Immune system, and ive been good, apart from lousy gum infections, I still think its been worth taking.... I cant work at all, due to so many things go wrong for me, at the mo, im having a falre up of fatigue, last week it was all my joints and that flare up lasted a mo nth, Im unrelaible to work, and sometimes I fel my body is dying...but thats due to exhaustion, fatigue etc... I hav a fab GP, my rhummy cant do anymore for me, up to the surgeons, need another spine op soonish...but scared as ive already had one...OH weel we struggle on.... take care and sorry I cant be more help to u on the work front...

Love Jill x
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Date: 11.06.2009
From: BLOGGER

Subject: Re: Methatrexate Users

Just back from Hossy consultant says slight detiorioration of the joints on last X ray fluid out of knee steroid in feel 100% of 50% if you know what I mean. Sulfasalasine + MTX recommended.Decided to stick with sulfa for the time being like a drink balance of what you like over possibility of making things worse.
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Date: 11.06.2009
From: Blogger

Subject: Re: Methatrexate Users

Anna if you can manage without working that is better keeping on top of your disease.
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Date: 11.06.2009
From: Anna

Subject: Re: Methatrexate Users

Thank you bothfor your advice, I have just got back from hospital with my first prescription for Meth I will be taking it on Monday so will let you all know if I get any of the side affects. If and when I feel any better I will probably feel a bit more positive about the future. It really does help knowing you are not alone as the only people who can understand what it's like are us sufferers.
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Date: 11.06.2009
From: Anna

Subject: Re: Methatrexate Users

Thank you bothfor your advice, I have just got back from hospital with my first prescription for Meth I will be taking it on Monday so will let you all know if I get any of the side affects. If and when I feel any better I will probably feel a bit more positive about the future. It really does help knowing you are not alone as the only people who can understand what it's like are us sufferers.
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Date: 12.06.2009
From: J

Subject: Re: Methatrexate Users

Hi Anna, remember it takes over 3 months to kick in ok...worth taking tho ok...Jill x
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Date: 17.06.2009
From: sam

Subject: Re: Methatrexate Users

I have been taking methatrexate for a few years.I was initially worried about hair loss but this side effect has not materialised for me.I do however get 48 hours nausea,and I am about to switch to injections to lesson this. Meth definately helps lesson the pain tho.
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Date: 19.06.2009
From: Jill

Subject: Re: Methatrexate Users

Hi Sam

Can u get Methtrexate Injections? mind u I already take Enbrel Injections, cldnt bear to have another Injection...the tablest make me feel nauseas too...horrible arnt they, bu=t the benefits are great, side affects are few on the whole
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Date: 12.07.2009
From: Emma

Subject: Re: Methatrexate Users

Hi Lisa, my husband has just been diagnosed with Psoriatic Arthritis and we are waiting for pendiing chest xray results the same as you were in 2008. I was wondering what you decided to do? I am dead against the idea of MTX after researching it but now just plain terrified after reading the comments on this forum, but I also want to Tom to have a good quality of life as pain free as poss. Just interested to know which way you went?

Kind regards
Emma :)
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Date: 12.07.2009
From: Emma M

Subject: Re: Methatrexate Users

Hi there Blogger, Emma from NZ here. Can you tell if the Sulfasalasine is giving you sufficent relief yet without the MTX? Or if there is anyone else who just takes the Sulfasalasine. It seems to me from what I have reseaced to be less toxic but not so sure about the side effects. Or could I be wrong?
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Date: 12.07.2009
From: Angela

Subject: Re: Methatrexate Users

Hello Emma M, I am only on sulfasalizine, i have been on it since beginning of April.
I have no side effects, but unfortunately my ESR is still going up and up, so my Rhummy wants me to go onto MTX as well.
I think the sulfa does give me sufficient relief, but i know the RA is there kinda lurking around, and a lot of time, and I still have my bad days but not as bad as they used to be though.
Hope this helps.
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Date: 12.07.2009
From: Jill

Subject: Re: Methatrexate Users

Hi Emma what bad comments have u read on this forum that r against MTX... Im on it, over 2 years now, docs keep High check on Usd that r on it, im also on Enbrel, had bloods doen every 4 weeks, if there was any Toxic probs, they wld take me offf it, so far I havnt had a prob, accepts feeling sick... Y r u so against this form of Help for your Hubby? I know when u read too much it can scare u, it did all of us that r on it< but its a trade off Im afraid, Have lots of pain and corrective surgery for deformed joints Trust me that is painful, Or take the risk of the Anti TNFS? everyone on her that take thoses meds havnt decided lightly, however, I couldnt NOT be without them, becos I wld be a cripple, think lots ppl worry far too much...there is far worse things out there that cld happen....just interested what has made U so against this form of Support and help??
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Date: 13.07.2009
From: J

Subject: Re: Methatrexate Users

Hi Angela...glad they r sorting u out at long last...going on the MTX along with the Sulfa(hated that med) will be very beneifical... remember too if there isnt any major difference, they may take u off the Sulfa and put u on mb Enbrel along with MTX...those two together work very well... they help dampen down the pain a lot...not totally, but enuff to cope with.... sulfa made me feel very nauseaus¦(sick feeling lol, cant spell nauseassueueuaueus!!) lol... anyway, felet fab coming off the sulfa so I knw it was that med making me ill daily...think lots of ppl worry about the side afects, of course we need to know about them...but if we r bad enuff to be offered them, then I do beleive that we r better offf taking those meds, than Not...I would be Scared to NOT be taking them...How do U feel about the MTX Angela? also what about the idea that U may have to go on injections at a later date? take care
Jill x
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Date: 14.07.2009
From: agnes bolwell

Subject: Re: Methatrexate Users

Osteo arthritis is an entirely different disease to rheumatoid arthritis. The latter is an autoimmune problem.
I've used methotrexate and found it was great stuff, the only problem is that is has lowered my platelets. I've stopped the methatrexate and I now feel tired to exhaustion, with all my aches and joint pains coming back. There is, ofcourse, no cure for rheumatoid arthritis.
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Date: 14.07.2009
From: Angela

Subject: Re: Methatrexate Users

Hiya Jill,
I get on fine with sulfa phisically but to be honest I am not keen on taking two lots of dmards, i know a lot of folk do,but I am not happy with the possible side effects.
The truth is for me i think in a nut shell, I am scared of what long term effects the meds could have on me,but I am more scared of what the RA can do to me long term, so until I can find an alternative I will do as I am told.
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Date: 14.07.2009
From: Lynne

Subject: Re: Methatrexate Users

Hi angela Jill is right about the meds . The consequences of not taking them can be far worse. Your bloods will be monitered for any changes, and if anything shows up you stop meds till it clears. Taking meds can significantly improve the quality of your joints for the future. Less damage caused. It does not matter if you have RA or OA the meds are the same. Wishing you all well. And good luck. Let use know how you get on xxx
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Date: 17.07.2009
From: lorraine denno

Subject: Re: Methatrexate Users

hello my name is lorraine ive been on methatrexate for three years. it seems to me every week i take it my joints are painful for three days. is this one of the side affects.the doctors just went up again. i feel sick even thinking about it cause i have asthma too
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Date: 17.07.2009
From: Lynne

Subject: Re: Methatrexate Users

Hi lorraine. Sorry to hear you not well at the moment.
I was on MTX for four years ( not on it now) did not get anything like that. It maybe that it is your arthritis that is not under control, and that it takes you three days for the MTX to get your joints under control. Your Rheumy may well increase your dosage and if that does not work he may well try you on another med. Ask about Anti TNF drugs next time you see him, They may just suit you better.
Good luck
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Date: 17.07.2009
From: glory swenson

Subject: Re: Methatrexate Users

i have been on methotrexate shots for 2 plus years. i did not know there was a oill form. i have severe RA. i have had many side affects fainting, dizzyness,lose of hair,not eating,lose of weight. now im ok. it took awhile but until something else comes along, i say its worth it. hang in there it gets better.gg
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Date: 17.07.2009
From: Lynne

Subject: Re: Methatrexate Users

Hi Glory are you still on MTX or have they given you something else.
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Date: 17.07.2009
From: Lynne

Subject: Re: Methatrexate Users

Glory just read your post again.. Have you looked onto taking the new biologic drugs called Anti TNF.. your rheumy prob hasn't mentioned them to you because they are very expensive (£10,000 a year). so they will only volunteer them to you as a last resort. If you feel your poorly enough that you need then ask. There are less side effects too.
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Date: 18.07.2009
From: GLORIA SWENSON

Subject: Re: Methatrexate Users

I KNOW WHAT YOU ARE SAYING, I HAVE HAD TO TELL EVERYONE I LIVE LIFE DAY BY DAY. MY GRANDCHILDREN SUFFER THE MOST . IM GG TO THE OLDEST AGE 3 . HE REMEMBERS GG PULLING HIM AROUND IN THE RED WAGON. NOT ANY MORE , NOW WE PLAY INSIDE ON THE FLOOR. IVE BEEN ON MTX 2 YRS. INJECTION
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Date: 19.07.2009
From: welshgirl

Subject: Re: Methatrexate Users

Hi All
I am new here diagnosed with PA(symptons started in Feb thought to be reactive arthritis) 2 weeks ago started MTX last Wednesday slight nausea Thurs, Fri & Sat but that's it. I also frightened myself when I read about the side effects - just waiting for it to "kick in" now!
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Date: 19.07.2009
From: Justme

Subject: Re: Methatrexate Users

I have been taking metho for over 10 years and have found it to give me less side effects than all the other meds i tried.

It can make you feel a bit sicky after you take it and the next day but th effects it gives you are worth it.

Another common one is mouth ulcers. I did suffer a bit with this but folic acid seems to stop it.

I know its really scary going onto a new drug but all you can do is try it as everyone is different. Fingers crossed it will be the drug for you - as when it works its amazing.
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Date: 24.07.2009
From: Lynne

Subject: Re: Methatrexate Users

Hi gals just me is right about taking the meds the benefits do out weigh the side effect. Plus we are all different and we don't necessarily get the side effects good luck girls
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Date: 26.07.2009
From: Sas

Subject: Re: Methatrexate Users

Can I take Anti-imflamms as well as MTX. I have taken Diclofenic in the past but it doesn't agree with me :-(? I was thinking Ibrufen!
Thanks
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Date: 26.07.2009
From: Jill

Subject: Re: Methatrexate Users

Yes..... im on ARCOXIA...anti inflams...appparently one of the best ones around for long term use.... Im on MTX and Enbrel.... couldnt be without my Arcoxia...diclofenac did not agree with me...plus its only mild too...
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Date: 26.07.2009
From: Sas

Subject: Re: Methatrexate Users

Thank you for replying and info Jill
off to GP's again tomorrow me thinks!!
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Date: 26.07.2009
From: Jill

Subject: Re: Methatrexate Users

Sas U must go back and get a goood anti inflam.... How long have u had probs? is it R.A. ? how bad r your joints, how long u had this etc....reason Im asking is becos the Docs tend to give out the least best ones, incase your prob clears up, and I guess in most cases it does, but then there r us lot, that r bad, and eventually get the best type of painkillers.... so please ask on here what we r on, and mb u can ask your GP or Rhummy Y U cant be on the same....the stronger painkillers do help control Our pain so much better.....DO not Give up x
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Date: 26.07.2009
From: Sas

Subject: Re: Methatrexate Users

Hi Jill
I have got PA just diagnosed recently, went privately to a rheumy going on his NHS list now started MTX 3 weeks ago my third dose will be next Wed but I cannot move my hands at all I think it's because not taking Anti-inflamm as well. I thought I was told I couldn't take AF's with MTX but I must have misunderstood!!! I am very confused still at the moment as you can probably tell LOL I am very grateful for your feedback and advice so again Thanks
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Date: 26.07.2009
From: Lynne

Subject: Re: Methatrexate Users

Hi sas have you got a rheumy nurse at your hospital . Sometimes you can give them a ring for advice worth checking out. Good luck
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Date: 27.07.2009
From: Sas

Subject: Re: Methatrexate Users

I haven't actually seen the Rheumy in a NHS hospital yet I am going on his list now saw him privately on 1st visit.
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Date: 28.07.2009
From: Jill

Subject: Re: Methatrexate Users

Ive been on long term anti inflams...Arcoxia.... along with the mTX and Enbrel.... u may find that if the MTX dont work as u feel they shld, they may lso put u on Enbrelits Anti TNF and injections weekly....so dont give up, and dont worry about side affects, they r small compared to the disease we have....take care X
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Date: 28.07.2009
From: Sas

Subject: Re: Methatrexate Users

Spoke to GP who said it's not recommended to take AF's with MTX told me I had to be patient as only taking 3 dose tomorrow(wed)! Patience is not my strong point!!!!
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Date: 29.07.2009
From: Lynne

Subject: Re: Methatrexate Users

What anti inflams have you got, like Jill said I have heared of peeps taking both... ring your rheumy nurse.. it does not matter if you have not seen the specialist they will still answer your question. GP's arn't always up to speed on our meds
Take care
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Date: 29.07.2009
From: Sas

Subject: Re: Methatrexate Users

Ok will do thanks Lynne
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Date: 29.07.2009
From: Jill

Subject: Re: Methatrexate Users

Sas I thought it was normal for ppl to take AFs, cos they help stop more inflamation.... cant seee y u cant have both, I have for years...my gp is gr8, and also my Biologics nurse checks my meds every three months when i c her in clinic.... Y dont u ring your nurse....GPs, well some of them dont have time to know much, some take rhumatology as a special field they train in..... find it amazing tho, that he said u cant have both together ? goood luck sas
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Date: 29.07.2009
From: Sas

Subject: Re: Methatrexate Users

I didn't actually speak to my "normal" GP she is on holiday, she is great her Husband is a Rheumy and she used to work for the Rheumy I am now see so she is really knowledgable. I don't know what to do now as I have not seen the Rheumy in NHS clinic yet Lynne suggested I ring his nurse anyway? I am confused again now Grrrr!!! Thanks again Ladies
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Date: 03.08.2009
From: Lynne

Subject: Re: Methatrexate Users

Hi sas I do hope you got the advice you need re your meds, it is not nice being in constant pain. Take care and please let us know how you got on xx
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Date: 05.08.2009
From: Lynne

Subject: Re: Methatrexate Users

Hi sas how are you today did you get sorted out with your meds xxx
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Date: 05.08.2009
From: Sas

Subject: Re: Methatrexate Users

Hi Lynne

No not yet the GP I see is back off leave tomorrow I am going to book a phone call with her.

Thanks for asking

Sas
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Date: 05.08.2009
From: Lynne

Subject: Re: Methatrexate Users

Wishing you luck sas hope you get sorted xx
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Date: 06.08.2009
From: Sas

Subject: Re: Methatrexate Users

Continuing story.........

Contacted GP today she spoke to a Rheumy who confirmed I could take AF's as well. I was so happy at last! Went to surgery lunch-time to pick up script and receptionist said Oh! I ahve a chest x-ray result in for you today (had this done 3 weeks prior to starting MTX hadn't heard anything so didn't worry she said I had to make a "routine" appt I did ask why? she said GP wanted to talk to me about it!!! So quess what now I am worrying about that Any ideas Ladies what this is about? Anyway appt for next Thurs. On a good note I have taken AF and hands are so so much better already. Happy days - I think?
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Date: 07.08.2009
From: val h

Subject: Re: Methatrexate Users

hi my mum went for well ladies check had bloods done when they came back they phoned her to say they were ok but she had to go to c doc got her self into right state got in to c nurse practitioner who explained colesteral was a little high and thiroid also but not enough to worry about and doc just wanted to explain why could receptionest not have said that and saved mum a sleepless night these people do not realise what worry they cause good luck hope it nothing prob just a bit of a chest infection dont worry
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Date: 07.08.2009
From: sas

Subject: Re: Methatrexate Users

Thank you Val for your kind words My Husband says not to worry either as he says it would not have been a routine appt and they would have stopped MTX straight away if anything to worry about.
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Date: 08.08.2009
From: Lynne

Subject: Re: Methatrexate Users

Konw what you mean sas my GP sent me for a chest x-ray last mon I have been booked in to see him next friday to get results. I ah blood tested prior to that they all came back normal.. I think well hope its just routine to make sure nothing else is going on..
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Date: 15.08.2009
From: Lynne

Subject: Re: Methatrexate Users

Bumped this one back up for vicky xx Hope it answers your questions sweetie
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Date: 20.08.2009
From: Jean R.

Subject: Re: Methatrexate Users

I was diagnosed in 2002 with sero-positive, erosive RA. For months I couldn't walk, hold a knife and fork,sleep, do anything without severe pain, even sleeping under a duvet was agony ! I tried different treatments with limited success, inc different dosages of methatrexate. Then, after a very bad flare in 2007 was switched to 17.5mg methotrexate weekly plus 75mg ciclosporin bidaily and 5mg folic acid 6 days per week. The fact that I am typing this, that my house is clean and tidy and that I just came back from a holiday in the Lake District where I did some (gentle) hill walking is proof that I finally found something that works. Yes, my comb has slightly more hair in it than I would like, I sometimes get mouth ulcers and I still get very tired and sometimes down about the need to take these meds. But I also thank my lucky stars that I can do things again that I never thought I would and that my family forget that I have a chronic progressive disease. My disease may flare up badly again but I am thankful for the respite that these drugs have given me - a few decades ago my quality of life and that of my family would have been zero because by now I would have been wheelchair bound. There are many RA sufferers for whom nothing works, I thank God I'm not one of them and my heart goes out to them. Very few are blessed with constant, lifelong good health and we will all need meds (sometimes v.strong meds)at some time but we are nearly all living longer than previous generations and should be thankful that these medicines exist for what is an awful disease. So, difficult as it is, don't be scared - be positive, with time you will find the mix that is right for you.
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Date: 20.08.2009
From: Lynne

Subject: Re: Methatrexate Users

Hi jean really pleased your meds are working for you. It makes such a difference to you life when they get this illness under control. Good luck
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Date: 21.08.2009
From: Donna

Subject: Re: Methatrexate Users

Hi all i have been reading every ones comments on methatrexate my rumatalogist told me i had ra and he is going to start me on this medicine in 3 weeks i am really scared about starting it but reading from all of you it seems the good of the drug out ways the bad that is good to know. Thanks to all.
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Date: 21.08.2009
From: Jill

Subject: Re: Methatrexate Users

Hi Donna, that has been true for us lot that r taking it, ive been on MTX now for over two years, but im also on Enbrel along with MTX, seems to work even better, so if u find that the MTX alone doesnt work well for u say after 6 months, u can ask to go on Enbrel if u r still feeling rotten!...so keep coming in to the Forum as u can learn lots about all the meds us 'Experts' take....let us know how u cope ok

Love Jill
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Date: 21.08.2009
From: Donna

Subject: Re: Methatrexate Users

Hi Jill,thanks for the advise i will ask to be put on Enbrel if MTX does not work for me. I do have a couple of questions did you have to take steroids if so for how long?I have been on them since July 10th and my doc is weaning me off them now.I was on 15mg now i am on 10 slowly coming down to not taking any i hope i can come off with out hurting real bad. Been off and on 3 or 4 differant times and each time i hurt really bad. And also do you have to get eye exams while on MTX? I will let you know how every thing goes. Thanks Take Care.
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Date: 24.08.2009
From: Lynne

Subject: Re: Methatrexate Users

Hi All lots of people are worried about taking MTX I wa son it some years ago. It is very worrying at the start. But it is a standard drug for traeting all forms of arthritis. Tried and tested. so I thought I would bump this one back up for all you new to it to have a read. Good luck to all
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Date: 24.08.2009
From: jill

Subject: Re: Methatrexate Users

Hi Donnna...i do go on steroids, and i do have injections,,,infact think i need a course again...sometimes when u have a first huge flare up, gps do give out a longer course...dont worry cos ur now coming offf them....I have had a long course, in the past...but now i take a weeks course.... not had to have special eye tests for being on MTX....but i get Iritis and i do have eye drops if having a flare up... Iritis is potentially dodgy as if untreated can cause Glocoma(eye disease)...... u take care and try not to worrry ok,..... all tho that is also normal to worrry.... give the meds three months to truly kick in!
love jill x
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Date: 25.08.2009
From: Jules

Subject: Re: Methatrexate Users

Bump bump this is usefull cos most of us go on this on this at one stage or other.
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Date: 26.08.2009
From: Lynne

Subject: Re: Methatrexate Users

Hi donna how are you now well I hope. Keep us updated with your progress. Good or bad we don't mind. Always happy to hear from peeps take care xxx
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Date: 28.08.2009
From: Me

Subject: Re: Methatrexate Users

Bump
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Date: 30.08.2009
From: Judi

Subject: Re: Methatrexate Users

Hi - just found this site and have been interested in the comments relating to Mtx.

I have been on them for about 15 years - only a small dose (7.5) when we tried increasing them I got boils on my bum...... (other medications for RA at present are Leflunamide and Diclofenic and folic acid). Folic acid twice a week (Monday and Wednesday) and mtx. on a Friday. (Wont go into other meds I have to take)

Regarding the mouth ulcers, in the early days I was advised by my rheumy nurse to double up on vitamin C tablets for a few days which I did and this helped me.

Regards

Judi
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Date: 30.08.2009
From: jill

Subject: Re: Methatrexate Users

Hi Judi...big welcome to this firendly forum....thx for info.... im on MTX 17.5 I tend to get Absesses in my gums...nightmare...recently had 4 teth removed all at same time...direct result of compromised Immune system..im also on Enbrel Imjections too..... Judi have u ever treid the Enbrel Injections seems u r a vetran to this disease, How bad has it affected u? have u had any joint replacements? corrective surgery etc?....being nosy soz....
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Date: 03.09.2009
From: Melissa

Subject: Re: Methatrexate Users

Have had psoriatic arthritis for over 6 years. Tried to keep it at bay with acupuncture, herbs, and diet. Rheumy want to put me on methotrexate, but I am scared! Does anyone have any result with diet - avoiding certain foods, or adding others in order to keep the inflammation and pain to a minimim? Side effects of methotrexate are daunting, and I love to cook and enjoy a glass of wine with dinner. Any suggestions appreciated. Tks.
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Date: 03.09.2009
From: jan

Subject: Re: Methatrexate Users

what is the name of the antibiotic please
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Date: 04.09.2009
From: jill

Subject: Re: Methatrexate Users

???
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Date: 06.09.2009
From: dave

Subject: Re: Methatrexate Users

me to i feel bad after also---helps though
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Date: 06.09.2009
From: val h :-)

Subject: Re: Methatrexate Users

melissa hi have oa but havr tried diet to keep flare ups at bay if u look on arthritis care they have diet help what helps what does not did not help me much but then i do not do fish which u need to eat so give it a try can not help and at least u will have tried it
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Date: 11.04.2010
From: Albert Jacques

Subject: Re: Methatrexate Users

Hi I was Dx with RA years age and was finally put on an anti-tnf in july 08,it wasn,t until a couple of months ago that the clinic realised I was about to be placed on MTX in 2000 but the RA collapsed the red blood cells causing Heamolytic Anaemia so it was stopped,now the Rheumatologist wants me to go on MTX finally but this means coming off the Azathioprine I have been on the last10 years, problem is I now have severe Bronchiectosis (COPD) hopefully I will find out soon what is happening.
Frustrated
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Date: 11.04.2010
From: Verity

Subject: Re: Methatrexate Users

Albert that sounds awful! What is heamolytic anaemia? Is it severe anaemia or does it have other symptoms?
Are you still on the TNF?
Take care xx
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Date: 13.04.2010
From: albert

Subject: Re: Methatrexate Users

Hi Verity,It was severe I was critically ill when taken into hospital and yes it does have other symptoms and I am still on the TNF but after talking to the Heamatologist yesterday it might be a no go because of my chest problema.

Thank you for your reply
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Date: 13.04.2010
From: albert

Subject: Re: Methatrexate Users

sorry Verity, my Hemaglobin went down to 5.3 and was given 6 bag transfusain, Hb was 13.1 yesterday, so at least the heamolysis is under control
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Date: 14.04.2010
From: jill

Subject: Re: Methatrexate Users

my hb is 10.1....nutrifils 1.6 so not a happy bunny cos got me op tomoz!!
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Date: 14.04.2010
From: Verity

Subject: Re: Methatrexate Users

Gosh 5.3 is sooo low Albert. What do ya nutrifils do Jill?
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Date: 17.04.2010
From: jill

Subject: Re: Methatrexate Users

Veriity....nutrilfils ....Neutropenia is an abnormally low level of neutrophils in the blood. Neutrophils are white blood cells (WBCs) produced in the bone marrow and comprise approximately 60% of the blood. These cells are critically important to an immune response and migrate from the blood to tissues during an infection. They ingest and destroy particles and germs. lol hope that helps, however, when I rang her with the results, she told me ive been as low as 0.9...... anyway, she knows best, and watches me closely...especially when on Biologics....xx
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Date: 10.08.2010
From: Miriam Okemow

Subject: Re: Methatrexate Users

I have started end of july/10 and so far all I have experienced is diarehea now first it was somewhat nausea but it's not all the time maybe every 2nd day or so it just started last weekend hope this helps.
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Date: 11.08.2010
From: Tom H

Subject: Re: Methatrexate Users

I'm due to start MTX on sept 15th, I'm a little worried as my neutrophil count when down to 0.05 for a few days due to a reaction to sulfasalazine. Anybody had as low a count as mine from MTX?

Thanks
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Date: 18.05.2011
From: lorraine keens

Subject: Re: Methatrexate Users

been taking methatrexate for 15 months take 20mg a week had no side effects at all doctors are really surprised & pleased at the same time blood test results are excellent must be one of the lucky ones
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Date: 06.01.2012
From: PNN

Subject: Re: Methatrexate Users

I have started mtx, so far no real side effects. I'm in the USA and my doctor has never done a chest x ray. Why are these needed?
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Date: 06.01.2012
From: bsk

Subject: Re: Methatrexate Users

Chest xray is done to see if you have tb or any other lung problems. I think! I believe the mtx can cause problems for lungs if there is existing disease.
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Date: 07.01.2012
From: Paula.

Subject: Re: Methatrexate Users

I had a chest x ray done on thursday, and I was physically checked by rhumy as well with a stetescope. Also had liver funtion test before the meds start. My brother has been on mtx for 3 months, and he said he is just starting to feel the benefits. What works for one may not work for another, some get side effects some don't. There are more to try if this one is no good. Every one is different. I have the phamflet on it, and looks like that may be the one.
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