Your thoughts on Sulfasalazine

[Ellinghamgroup]

Went to my appointment on Thursday & got quiet upset. The soreness in my chest I've been told is my Rheumatoid, & my blood is to sensitive to increase methotrexate, so they want to keep me on my current dose but add in Sulfasalazine. I inject methotrexate because I got so sick on the oral form, & have been told that Sulfasalazine will increase to 4 a day orally & will affect my stomach. Really bad news, I do not want to take it I feel that the meds can be worse than the rheumatoid. I get really concerned when I read how many meds some of you are on, does it ever stop & what quality of life can you have on these meds. Would really appreciate your help.

[Hidden]

I'm sorry to hear your news and I am sure someone will be able to help you. Good luck!

I'm sure you will have googled it too but I found this: arthritisresearchuk.org/art...

[Hidden]

Hi. I am on Sufasalazine, on the max dose (6 a day). I did have a little nausea at first but after increasing the dose slowly it gave me no more trouble and I have to say I think it's a brilliant drug. It's put me into a so called drug remission. Give it a try. What have you got to lose?

Carolyn

[Ellinghamgroup in reply to Hidden]

Thank you, that sounds really hopeful, it's just really hard to function at work when you feel so sick. But I will give it a try now I know there is a chance it could be right for me.

[Hidden]

As Carolyn observes - what have you got to lose by trying Sulfa? It isn't like Leflunomide which remains in the system for months so if it doesn't work for you then you can always stop. Alternatively perhaps you could ask to try Hydroxichloraquine instead? It is the least toxic of the DMARDs - you don't have to have blood monitoring while on it even). And, although my GP and rheumy both suspect it won't be enough to keep my RA in check in the long term, I have tolerated it perfectly - unlike Sulfa and MTX (which I also took by injection because of GI issues).

Perhaps I'm just in spontaneous remission but since I've taken the Hydroxichloraquine (and this is my second time on this drug- last time with MTX) my ESR has gone from 52 to 17 and I have no pain or stiffness currently so I'm hoping and thinking that my doctors were being too pessimistic about Hydroxy. Might be worth a try? Tilda x

[Ellinghamgroup in reply to Hidden]

Thank you I will talk to my rheumy on my next appointment, if the sulfa doesn't settle.

[helixhelix]

I think you've put your finger on it when you say quality of life. As for me that's the thing I'm aiming for rather than thinking about what drugs or how many. So I've been happy to take my consultant's advice about what would work best, and now take MTX (by injection), Sulpha and Hydroxy. And it's fine. Sulpha did take a while together used to,and I did have some rather embarrassing stomach effects to start with, but that didn't last. And I can now have a great quality of life with all these drugs, so 90+ tablets and an injection every week is manageable if it means I can live relatively normally.

[Ellinghamgroup in reply to helixhelix]

I work in retail, so embarrassing side effects could be a problem lol, but thank you for your reply.

[Tillytop]

Hello,

I really feel for you because as I suspect most of us here find, it's such a difficult balance between doing the best we can to keep the RA at bay, and coping with potential side effects of the meds. In terms of Sulphasalazine I think it was unfair of the doc to tell you it "would" affect your stomach, rather than to say it "might" because an important lesson I have learned over the years is that everybody is different and until we try a particular med, nobody can say for sure if/how well it's going to work for us and whether or not we will be able to tolerate it. I have had RA for the past 18 or so years and during that time I have had many of the available meds - some alone, some in combination and I can honestly say that only a very small number (including methotrexate) have given me side effects which have meant I couldn't continue with them. And in every case, the side effects have gone completely once the drug is out of my system. That's not to say I don't still get nervous about starting new meds but the "trick" I use to help me is to make a "bargain" with myself. So I tell myself I will give whatever it is a try for, say 4 months, and if at the end of that time if it isn't right for me, I will stop. I wouldn't stop without discussing with the consultant first but by making my "bargain" I feel as if I am taking back some control of the situation, and giving myself a "let out" if need be. That might sound like psychobabble but it helps me to cope.

I know everyone is different but Sulph was my first DMARD, many years ago and although I struggled with side effects for the first few weeks, once my body got used to the full dose (which for me was four tabs daily) the side effects disappeared completely and I took it for about 10 years after that (often in combination with other meds) without any problems at all. I only stopped it because the consultant felt it was the other drugs making the difference so it was no longer needed.

I really hope that if you do feel you can try the Sulph that it helps you and that you are able to take it without long lasting side effects.

Tillyx

[cathie in reply to Tillytop]

I tried to recommend this but button wouldn't work!

[Tillytop in reply to cathie]

Thanks Cathie!

Tillyx

[Ellinghamgroup in reply to Tillytop]

You are right a positive mind is very important, I like the idea of starting this drug slowly, this is such a good site because sadly for the wrong reason you can get such great support a experience share. Thank you for your reply.

[Tillytop in reply to Ellinghamgroup]

You are so welcome. I hope so much that if you do decide to go for it that the Sulph helps you with no long term side effects.

Tillyx

[norfolkjo]

I had nausea and the runs for few weeks only .. I has rare psychosis on it and am only on two tablet daily with no side effects at all . The pychosis was due to me being allergic to a lot of drugs so dont worry my rheumatoid nurse had never seen a case in thirty years. ..so I wwouldn't worry sulfa is working well but adding in metho cos I cant take full dose of sulfa

[Ellinghamgroup in reply to norfolkjo]

Thank you, great to share thoughts.

[Hidden in reply to Ellinghamgroup]

HI - I just wanted to add that, although I have a delicate stomach, I had no problems at all during the three weeks I took Sulfasalazine with embarassing tummy problems. I did however get other quite serious problems which meant I had to come off it straight away. But we each react to these drugs individually and, where Sulfa was concerned I couldn't hack it myself but managed Methotrexate for 18 months.

[Ellinghamgroup in reply to Hidden]

Thank you for your reply, I also have a sensitive stomach due to the side effects of anti-inflammatories, hence going onto injecting mtx.

[mattcass]

Elinghamgroup, Nice to talk to you like yourself I also take several meds 8 daily 1 weekly i have RA and IPF and very recently Sulpasalasine again this affects eveyone differently, i was told it might affect my stomach once I reached the full dose which i beleive is 3,000mg daily but no side affects yet touch wood. We can only go with what is recommended by our GP or Consultants and whatever we take works.Matt

[Ellinghamgroup in reply to mattcass]

Glad to hear it works for you, I will give it a try, like you stated as it is introduced slowly the side effects might be less, fingers crossed. Thank you for reply & help.

[cathie]

I feel for you. If it was me I'd give it a go. It doesn't affect everyone in the same way. Perhaps make any change gradually. It sounds as though your rheumy might be working you through the dmards. Have they discussed the biologic meds with you yet. I'd try to raise this at your next appt as they can be very effective.

[Ellinghamgroup in reply to cathie]

From all the replies it has given me the confidence to give it a try, this is such a good site. Thank you for your reply.

[earthwitch]

I couldn't tolerate it, even though I managed to get through the first few weeks of it feeling fine. It was when I got to 4 tablets a day that I got really ill and developed a hypersensitivity reaction. I guess my advice would be to not increase to the next level of dose until you really are sure that you feel OK on the current level. I know that will lengthen the time it takes to start working properly, but given that so many people seem to develop intolerance reactions to it, I would think it would be better to take it slow than what happened to me - where I had to stop it suddenly. FWIW, it never actually affected my stomach or made me feel nauseous.

[Ellinghamgroup in reply to earthwitch]

Thank you for being honest, they are giving me time yo think about it & there is definitely a lot to think about.

[Judetheobscure]

I was on Sulphasalazine for many years. It was very effective and resulted in no discernable side effects for me. Hope it works that way for you - there's no way of telling until you try. Jude

[Ellinghamgroup in reply to Judetheobscure]

Thank you for your reply, here's hoping.

[dbestdeb]

I've been on it for a year at 4 tabs per day and I have no side effects other than a little acid reflux. Be sure to take it in the middle of a meal.

[Ellinghamgroup in reply to dbestdeb]

Thank you for your reply, & the advice as to when to take them.

[Marz21]

I take sulfasalazine and would advise building up the dose really, really slowly, when I first did it I built up a tablet per week...too quick, felt quite sick frequently. Like morning sickness all day long. I came back down on the dose, then tried building again, Im upto the full dose for me, 6 a day and did find it fine. Made a huge difference to the RA, plus I have ulcerative colitis so it was fine on my stomach. Just gives you very yellow urine which is a bit strange! It leaves the system quickly so if you struggle you can come off it easily. Hope it helps!

[Ellinghamgroup in reply to Marz21]

This is good advice, because they want me to up to 4 a day in 4 weeks, as I do seem to have some intolerance it might be better to increase slower. Thank you

[Riedenise]

Hi Im on MTx & Hydroxy first then they added sulfa gradually I now take 4 a day. I had side effects from the Mtx & Hydroxy but none from the sulfa at all. I think we are all different & have different reactions/tolerances to our medication.

I think you should give it a go but do it gradually, if it doesn't work for You then there are other things they can try. I also take a stomach tablet Omeprazole because Im on Naproxen, it could be down to taking that or Im just lucky not to have any problems with it, Take care, rie x

[Ellinghamgroup in reply to Riedenise]

Thank you for your reply, it seems the majority votes are give it a try, so I will.

[grace37]

I've been on sulf for over 18 months with no side effects whatsoever, just come off it as I started Enbrel. On injections of metex and steroid tablet once daily but that;s it. Folic acid which doesn't count. Found metex tablets much harder on stomach. Keep going, I am almost at the stage where I sometimes forget that I have this diseas

[Ellinghamgroup in reply to grace37]

Thank you, hope to get to that stage one day, glad to hear things are working out for you.