Sulfasalizine suddenly working after 4 months

[Smelliott]

Hey all. I've been on sulfasalizine as part of triple therapy (methotrexate + hydroxychloroquine + sulfasalizine) for 4 months now, with seemingly little to no benefit, and am due to start adalimumab in a couple of weeks. However, in the last few days the sulfasalizine seems to have suddenly started working. I managed to walk around town for the first time in 6 months yesterday, which felt amazing. I'd kind of given up on it, to be honest, and although I'm not 100% yet it suddenly feels as if it might do the trick (although I am still on 12mg of prednisolone daily).

Has anyone else had something similar happen to them? I'm kind of tempted to delay starting biologics now, as if triple therapy does the trick it means I can keep biologics back for if I need them in the future...

[Brychni]

Hi - I was started off on hydroxychloroquine. My symptoms were 'mild' at the time but they started getting more frequent and a little bit worse although still nothing compared to others on here.

Rheum. nurse added sulfasalzine which made me feel headachy, drowsy and frankly quite depressed after only a couple of weeks. I stopped it and went back to normal. I noticed that my energy levels went up more than expected and reasoned that although the hydroxy isn't doing anything for the disease or my occasional bouts of pain, it does seem to be doing 'something'. I reckon it reached its peak of effectivenenss during the time I was trying the sulfasalzine. My pain levels however got slightly worse, so I think the sulfasalzine was doing something for that. It's a shame that it made me feel so ill because now I'm waiting to start mtx and I really don't want to.

[Smelliott in reply to Brychni]

Hi! Apologies for the short reply, I'm just making lunch for the 1 year old. However, if it helps I've been on methotrexate for 8 years now and suffered zero side effects at all, and found it very helpful! My disease just progressed around new years to the point where I needed to add something else to the methotrexate. Hope that helps ease your anxiety!

[allanah]

That's fabulous. Great news. The doc and biological assessment team will check your DAS ( disease activity score) anyway before you proceed. So if you are well enough they might just leave you on sulpha just now. Hope you are sleeping better too.

See it works !!!

[Smelliott in reply to allanah]

Fingers crossed! 😬

[allanah in reply to Smelliott]

If you can😂😂

[Smelliott in reply to allanah]

Fingers? No problem. Toes are like useless sausages though.

[allanah in reply to Smelliott]

😂😂

[KittyJ]

That’s great news, well done for persevering. It will also give others encouragement not to give up too soon.😊

[Smelliott in reply to KittyJ]

Yes, that was partly my motivation for posting this - things can seem pretty bleak with this disease when things aren't going well, can't they? It's always good to hear good news stories!

[KittyJ in reply to Smelliott]

Definitely, the waiting game isn’t fun.

[helixhelix]

Good that things are changing for the best, but if you are still on 12mg of Pred I think it’s a bit early to decide you don’t need biologics......hang on a bit longer.

[Smelliott in reply to helixhelix]

Absolutely, I was leaning more towards delaying starting biologics and seeing how it went rather than sacking it off altogether. 12mg is still a fair whack of steroids.

[allanah in reply to Smelliott]

I'd go with what your doc advises too. Biologics might mean then you get the steroids down.

[Smelliott]

The rheumatology team are also of the opinion that it's worth holding off on the biologics for a few more weeks to see if I continue improving, if anyone was interested. Although I'm still going to have all the screening tests done just in case we do decide I need them. Fingers crossed I don't though!

[Smelliott]

Just an update for anyone interested, spoke to a rheumatology nurse yesterday who confirmed that my inflammatory markers have dropped massively, so they're also keen to hold off on my starting the biologics to see if things keep improving on sulfasalizine. I am still improving, although this has slowed a lot, plus I'm very slowly reducing my prednisolone again (down to 11mg now). Hoping I might get another big step forward in a month or so when the higher dose of sulfasalizine kicks in.

[Hidden in reply to Smelliott]

Good news.. that’s what I like to hear. Hope things keep improving

[Smelliott in reply to Hidden]

Thanks! Me too!

[Boxerlady]

Only just seen this update - great news, long may it continue 👍I'm on the same triple therapy and 3 months on things are much better than before I added the Sulphasalazine. They were talking about a biologic before that but hopefully we can keep that as a back up plan for further down the line 😊

[Smelliott in reply to Boxerlady]

That's exactly what I'm hoping! Fingers crossed for both of us!