Sulfasalazine side affects, what DMARD next? - NRAS

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Sulfasalazine side affects, what DMARD next?

mistygrey profile image
mistygrey

Morning

I started sulfasalazine not so long ago and the rheumy stopped it as I was having palps on it at night that kept me awake :(.

What DMARD have people tried next after sulfasalazine and has anyone else had similar experiences with sulfasalazine? I’m disappointed as I thought this one would have the lesser of the side affects to other DMARDS and I’m so sensitive to meds.

Thanks

12 Replies

If you go to the NRAS website and look at the treatments pages, it explains about the DMARDs - the Disease Modifying Anti-arthritis Drugs that we are offered first. If you are normally sensitive to medication then starting one of these at low doses initially is a good idea.

I was moved from sulfasalazine (like you my body didn't get on with it) to methatrexate.

These are the two DMARDs I've had since diagnosis in May

Hi how are you getting on with methotrexate? Is it any better? I felt terrible on sulfasalazine palpitations, felt completely groggy and even more exhausted! With a very sickly tummy.

I couldn't get on with the tablets so switched to injections.

Sadly for me after 2 separate attempts on the injections at different doses I don't get on with it, I get really bad migraines.

It did make my joints feel better though and alot of people do get on with it really well.

With DMARDs everyone reacts to them so differently you really have to try them and see how they work for you. If it wasn't for the the silly migraine methotrexate would have been great for me .

Hope you find the right one for you, just because sulfasalazine didn't suit doesn't mean mtx won't x

Hi mistygrey. Yes, I had to stop SSZ too. It was mostly because of worsening of tinnitus but I did have other side effects too which made me feel quite ill. Some people get on great with it and have been on it for a very long time which just goes to show that we are all different and what suits one dosen't necessarily suit another unfortunately. I am on Methotrexate and have been since day one which was September last year - I get on with it OK and hope I continue to.

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I started on MTX pills then to injections after an 8month battle with it I was put on sulfasazine which was not good for me at all like you palpitations sore throats itchy and other things. Went into lefluomide for 5 weeks with a break after 2 weeks but headaches were dire and just could not do anything.

However this is not the norm so MTX works well for so many so worth asking about.

I am now waiting for biologics to start as my body has not liked DMARDS at all. However it’s 15 months to get to this point and now just on co codomol and president to keep me going (just).

Patience and allowing drugs to settle is part of the route but also for me knowing when enough is enough too.

Hi the first time i took this i had the same experience and fainted at work when on 3 tablets a day. The second time i had hives. Ive tried methatrexate and leflunamide with terrible side effects and now on biologics. I hope they find something right for you x

mistygrey profile image
mistygrey in reply to Ms-D

That’s a shame for you and sounds terrifying!!! I think there must be something in Sulfazaline that has that affect. I also felt so dizzy on it too! I don’t think il do well on the other Dmards are so sensitive to meds as it is and wish I could try biologics but I don’t think they’d give me them right now :( I’m not sure if I would meet the full criteria just yet. Which one are you on? Glad you found something that works!!

Ms-D profile image
Ms-D in reply to mistygrey

I tried all three dmards and then tried Benepali but after 9 weeks it weared off and pain came back. I took it for 22 weeks before stopping and am now on Idacio a biosimilar to Adalimumab. It will take time to kick in so giving it a go. Please dont give up and if you feel the meds are not for you fight for a change. They always say give it time but if side effects are that bad no one can tolerate them. I felt awful on all mine and chest pains were terrifying. Keep me posted x

It depends on which your Rheumy (& you of course) think would be the better option for you. I was already on MTX & trying double therapy when I had to stop SSZ, for a different problem, so started leflunomide, which also had to be stopped. As hydroxychloroquine was the first DMARD I'd had & stopped working that was it so still just on MTX (at a higher dose initially which had to be reduced again).

Maybe have a read up on the different DMARDs will help prepare you nras.org.uk/getting-establi...

Hi

I started on methotrexate which did not agree with me, brain fog being my worse side affect, then moved onto sulphsalazine.

The sulpha has been my saving grace even though I have all the side affects most of the time.

I have thought of changing drugs again as the dizziness is a bit of an issue and stops me doing what I need to do on occasions but with covid i'll carry on a bit longer.

I assume that it will be biologics after trying metha and sulpha so happy to wait, good luck...

I have been on this med for about one month. I do not feel better iam just in a big flare up.

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