Sulfasalazine update

[Lochy]

I started sulfasalazine at the end of January so this is week 15. Had vague symptoms over first few weeks especially nausea and a bit of diarrhoea. More settled now although ‘not feeling quite right’ on some days still happens.

My right knee has behaved itself so far, still feels a little achy but I’ve decided that is due to the damage caused by the swelling and general wear and tear after a previously active life!

My dilemma now is that I don’t feel it makes a great deal of difference. I don’t feel remarkably better since taking it and have only tapered by nearly 1.5 mg. I still have achy rotator cuffs, tight groins and my lower back feels weaker. I am walking daily and do Pilates twice a week (one hour long class and a 20 minute strengthening and stretching myself)

My liver function tests seem to be improved and I’ve just heard today that my CRP is 5 the lowest it’s ever been. Perhaps this means the sulfasalazine is working?? LFTs variable but definitely improved overall - never very sure what that means.

I feel that when you don’t respond as the medics would like - in my case I couldn’t taper easily and then my right knee became swollen on three different occasions - it was felt I also had inflammatory arthritis, hence the experimenting with other drugs.

Ideally I’d like to stop all the drugs except prednisolone and carry on with a slow taper. Perhaps I’m being unrealistic expecting a more significant improvement more quickly once other drugs are introduced to speed up your steroid reduction.

So that’s my update. I know there isn’t many of us here on sulfasalazine but it’s likely some will be offered it. Currently as the weather improves I have noticed my face and hands are far more sun tanned than usual which I’m assuming is the ‘increased sensitivity to the sun’ that is mentioned in the leaflet. Unsure if that is good or bad! I’m still wearing my high factor face cream and I’m still tanned!

I do feel very fed up at times and worn down by my ailments but I think we all do. It’s dragged on so long now (5 years) I do despair if I’ll ever be rid of it and relish the thought of ‘feeling normal again’ albeit with the add ons of ageing that have been hidden by the steroids. 🙄

[Craftnut68]

Hi Lochy, I don't think I can give you advice about prednisolone but I'll give you my tale. I was started on 60 mg prednisolone in July 2015 as I had developed polymyalgia and also had a stroke mand my eyesight was compromised a bit and there were thoughts of GCA. The prednisolone was slowly decreased and I am still on 4mg my GP not keen to bring them down much further at moment as I still get pains in my shoulder and down my right arm so can't give you any further info on this

[PMRpro Ambassador]

One rheumy was very keen to start me on sulphasalazine but it had to be done under specialist supervision and I was about to move so it was left, thank goodness! Never been suggested here.

I was always under the impression that a single swollen joint wasn't enough to decide it was an inflammatory arthritis. And I really don't get the idea of using two drugs when one does the job ...