Sulfasalazine - to have NOT

For the past 6-7 weeks I have been getting headaches, loss of concentration, sweats, tight chest,irritating cough and an awful colour to my skin. Well I had a problem with pred and had to come off it, the main side effects of that subsided as I came off it (never again to go on it!) but all the above continued, and I think I started to age as well. So I had a think about what other changes had happened easy Sulfasalazine! I had never managed to increase the dose up to the required 2 twice a day because of the headaches, was the low dose contributing? I stopped taking them on Saturday last and slowly but surely I am feeling much better and the above are improving--now I don't see my rheumy nurse til next week, so I won't tell her til then about my little experiment. She was thinking of trying me with Embral, but do you know what? I can do without the side effects of all this stuff and just stick to the MTX and NSAIDS, unless anyone can tell me there are no side effects from it!!

19 Replies

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  • I had the same side effects and had to come off Sulfasalazine - was only on it for 3 and half weeks but it made me feel horrible and when I came off it I was so relieved. You should maybe try Embrel before you decide as, if like me, you're fine with MTX then you may also be fine with that one - we each react differently to different drugs and no one can tell you how a drug will make you feel. TTx

  • Hello, I've been on enbrel for 5 months now without any side effects, has worked fantastic for me along with MTX

    I was on sulfasalaszine but no side effect either thankfully :) hope you get sorted soon!

  • Cassapp i agree for some of us the side effects of these drugs are as bad if not worse than the ra, i had the chest problem with metx and had to come off it and am now on leflunomide unfortunately i think that at last it is working, i say unfortunately because up until this week i was determined to come off it as the side effects were so annoying and there didn't seem to be any benefit.

    I have to rethink that!

    Have your ra symptons come back with a vegence or are you feeling a bit better.

  • Mads, I just finished day 3 of leflunomide, not noticing any changes. How long did you take it before you thought about rethinking? I don't notice any side effects yet either.

    My Rheumy says Arava is probably the best tolerated of any of these drugs. Good luck, hang in there :) Loret XX

  • HI Loret I took the 10mg for the first 6 weeks with no problems but when i went up to 20mg my face, neck and hands got really really red and itchy. I had to gradually eliminate a number of the drugs i am on to pinpoint the arava. The itching is really frustrating and my hands have now got a rash. I just don't feel well on it at all.

    My doctor also said that there was very good responses to arava from other patients so it could be just me.

    you will probably do well on it.

  • Hi Cassapp

    Bizarrely, I had the same effects with MTX and had to stop taking it after 6 weeks of hell, when eventually I became short of breath too!! I've been on Sulfasalazine since last June and, after a few hiccups at the beginning (headaches, shakes etc), that seemed to settle and I've been fine since. The only problem is that it's not holding the RA back on it's own, especially since reducing the steroids, so I'm being started on Leflunomide on Thursday. Mads - what probs have you experienced with Lef, and are they still as 'annoying'?

  • Really strange how the drugs affect us all so differently.I can't take sulfa it makes me so ill but i'm fine with MTX although it's not so effect now.I'm waiting for an assessment for anti TNF and if i'm offered embrel i think i would bite their hands off at the moment.Good luck with your decision

    Julie xx

  • Your post has made me realise that I haven't got to full dose of sulpha yet, just on one tab twice a day, so wondering how I'll manage the increase. But it does all seem so individual how we get on with each drug.

    It's obviously your choice what you take, or don't, from what is offered to you. But do try to think about the long term effects of your RA not being completely controlled, and balance that against the side effects now. If I knew I wasn't going to get any more joint damage than I have at the moment then I'd probably throw a few things in the bin, but I'm putting up with it cos don't want to get worse when I'm older and less able to cope anyway. Polly

  • Hi all, thanks for the comments. I had already told my nurse that I didn't think the Sulf was for me thats why we had discussed embral and I can honestly say I feel tons better since Saturday. The RA is no worse or no better for it either. If I see my nurse I will tell her before next week (we work from the same hospital, I'm an ortho nurse). I have discussed it with my GP because sulf is contra indicated against another medical problem that I get from time to time - perhaps that's why it isn't agreeing with me, and he agreed that it may or may not help me and to watch for the side effects. I've not really had much problem with MTX apart from nausea at the start but taking it at night seems to help that and its not really an issue now. Oh well back to the drawing board

    Carol

  • Just seen this, after writing my own post on the subject!

    I hate the stuff! Made me feel awful. Terrible depression, numb feet, cough etc etc. I too took myself off the stuff. Unfortunately I can't get an appointment Until November.

    May I ask? Were you still in pain on the sulfasalazine? I still experienced awful pain.

  • Different meds suit different people and not everyone has side effects with them all.. I had v bad headaches with sulphasalazine even at the lowest dose..

  • sounds like i have been lucky been on a high dose of sulpha 5 tablets per day for at least 6years and no real side effects (yet).

  • sorry just to add been on enbrel for about 6 weeks and that seems ok no side effects with that either

  • 5! I thought the 2 I take was enough, they're so huge as well. Didn't realise you could go up to 5. Only been on them a month as also on MTX & hydroxy, but still have swollen/tender joints so I guess I'll be put up as well. Ugh.

  • I couldnt even manage the 2 sulafazalzine a day, I percivered but felt like my head was going to explode, I upped to the 4 as instructed but within 2 days ended up in A n E I thought I had a brain tumor or something, I completly had the worst headache/ migrane ever, couldtnt stop being sick, struggled to see and felt as if my brain had swelled 5 times its size and it was going to burst out off my head.

    They took me off it there and then, previously my rheumatologist had told me to try and percivere with it as sometime the headaches fade after a while!!

    If your rheumatologist thinks you need Enbrel I wouldnt dismiss it straight away! I know the side effects off these drugs are scary as hell but if we read the side effects off paracetamol we would never touch them!

    Ive been unlucky with the meds so far, as Ive said I couldnt continue on sulfazalazine, I wasnt allowed the hyrdroxc due to previous uveitus and the h gene thing, oral mthx made me so sick I would spend 2 days a week on the toilet from both ends sorry not nice to say but true, then I would feel awful for another 2-3 days so was only getting 2 days okish, I take the injection form off mthx now and have banished most off the sickness except for nausa feeling on the first day but I can cope with that, Ive had worse hair loss on the injection form and some mouth sores but again nothing too serious. then I took enbrel and for me even though I noticed a slight difference in my ra, I ended up ill more and more as it gave me too much off a lowered immune system so I ended up with repeat lung and chest infections and well as repeat water and kidney infections.

    I was due to start rituximab Monday but thats been delayed at the moment, Im not worrying about the side effects I could have from this next treatment as Im trying to be more focused on the beniftits I could get if the treatment does work.

    After all the most important job our rheumatologist has is trying to slow this horrid diease down!

    If you qualify for enbrel then your das score is obviously high enough that your ra will be contiuning to cause permenant damage to your joints, so for your longer term health I would try and look past the what ifs off the possible side effects and try and focus on the amazing results these drugs can bring.

    Fingers crossed for you, that you find a treatment that suits you soon

    Julie x

  • Hi Casapp, sorry you've had a bad time on Sulphasalazine I had to stop taking it too, it made me so ill I couldn't get off the sofa and thought I was dying. MTX was a little better but had to stop that after 3 yr too.

    As others have said what suits one might not be suitable for another it's all trial and error. My advice would be to try the Enbrel it might be the one for you and you'll never know if you don't try it.

    Good luck and do what you feel is best for you not others.

    Beth x

  • Hi there,

    I have been been on 6 supphasalazine tablets a day for the last 4 months, i must be lucky as i have had no side effects, and its still not doing a lot for my ra. Hope you get sorted out,

    Carol

  • Hi, hope things improve. I got RA in March and tried Methotrexate (ill) Remicade( anaphylasis) the sulphasalazine which has been good to me but not shifted all the symptoms and now on Enbrel for last month .. so far a bit improved.

    Wierd how one helps someone and not others. I'm so glad we can get different meds to try (even if it takes a long time!) Axx

  • after taking sulfasalazine for inflammation of colon for about two weeks....this med flared up my idiopathic peripheral neuropathy....burning numbness feet and legs....doctor said stop immediately....pains are starting to go away little every day

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