sulfasalazine or leflunomide

[Sunnyseas]

Hi all,

Mtx didn’t suit me so my consultant mentioned these 2 to add to the hcq I already take. Hands are playing up badly again so know I need something else. I’d like some idea what to expect from these and if one may be better side effect wise than the other? Thanks everyone, ss

[springcross]

I've only ever tried Sulfasalazine and MTX. The SSZ worked very well in controlling my pain. I did however have some side effects from them but you may not get any if you take them, it depends as we're all different. The one thing I will say about them which a few people have mentioned on here in the past is that they have experienced tinnitus and those who already had tinnitus (including me) found they made it worse. I hope whichever one you try suits you very well and that you get few, if any, side effects. x

[tubbytomo]

Hi I was on leflunomide for two yrs and thought was good and my body tolerated it with no side effects ..... except it gave me neuropathy which I now have for life which is is a rare side effect so please just look out for any tingling and numbness in case ... it works well with hcq so good luck x

[Sunnyseas in reply to tubbytomo]

Thanks for replying tubbytomo. I’m very sorry you have neuropathy, I hope you have found a better alternative, ss

[tubbytomo in reply to Sunnyseas]

Yes I’m now in bio logic injections called Benaparli along with the other meds it’s dampens it but still lots of joint damage but it’s nature of this nasty disease isn’t it x

[SlothSandpit]

I'm on Sulfasalazine at the moment, which I started in September last year. The first month I felt really rough - bad nausea and headaches but it calmed down after a couple of weeks. It's definitely helped my hand and knee pain but not completely. We tried doubling the dosage in February but I couldn't cope with the headaches so I've gone back to my original dose and all the side effects have gone. I would echo what Springcross said as I did get tinnitus as well but it's pretty mild and doesn't bother me really. I hope whichever one you choose works for you! Definitely both worth a go.

[Maggie_May]

I was first prescribed Sulfa and Mtx in 2014 , I couldn't cope with the side effects of mtx so was changed to sulfa and Lefludomide which gave me stomach problems and I lost a lot of weight so I am now working my way through Biological injections and still on Sulpha. I have very bad tinnitus which I didn't realise could be due to the Sulpha until reading the replies to your post. I hope you find these work for you, fingers crossed you don't get any side effects. x

[Boxerlady]

I added Sulfasalazine to my existing Methotrexate and Hydroxychloroquine and for me, it was a game changer.A few transient side effects but only for a few days with each dose increase (now on 5 tablets a day) apart from the exciting day-glow yellow wee 😁

[Garnacha]

I'm on hydroxychloroquine, methotrexate and since March leflunomide, no side affects at the minute but if it wasn't for the steroids I'm still on (tried tapering off after 6 weeks and the pain was just as bad so back on them for another 8 weeks) no difference to the pain as yet, I'm hoping that once the 8 weeks are over the leflunomide will have kicked in

[Madmusiclover]

Sadly I didn’t get on with any of them, including Methotrexate. Headaches with Sulfa and feeling just awful and tearful on the other two, for no evident benefit. Happily I’m now on Baricitinib, but it was a bit of a voyage of discovery, there are many drugs available, don’t worry if you can’t tolerate them.

[LoneEra in reply to Madmusiclover]

I’m so relieved to find someone else who was tearful on Leflunomide. It gave me a very low mood. And yet I haven’t seen this listed as a side effect anywhere.

[Madmusiclover in reply to LoneEra]

Bless you. Tell it like it is to the consultants/nurses. We have to go through all these cheaper drugs to gain access to the biologics. Well we do here in leicester. One consultant got rather shirty with me for not being able to tolerate them. She gave me an apology. It’s all about funding. But it’s not. It’s about you. My drugs are expensive but cheaper than methadone....

[L-DL]

I was taken of Leflunomide due to neuropathy and dreadful headaches. I was switched to Kevzara which is a biologic inject & has worked very well.

[tubbytomo in reply to L-DL]

I was taken of it also through neuropathy same it never goes away now got it for life

[Helen-NRAS Moderator]

If you would like support, information or just someone to talk to, our NRAS helpline is open every week day from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Or have a look at our website nras.org.uk. Kind regards.

[StormWolf]

Hey, as many people in here have said we can all react differently to meds. I’m on Hydroxychloroquine but was put on Sulfasalazine in Feb. Only took 2 tablets instead of 4. My RA improved but side effects included headaches and itchy rash on my legs, arms and chest. Rheumo has put them on my list of drugs I’m allergic to. Good luck with it amd try to stay positive xx

[Adnil53]

I can’t take any of those medications ! I currently take methotrexate and Adalimunab injection