Sulfasalazine, anything good?

[Fluffontoast]

I'm due to start Sulfasalazine, but everything I read about it here seems awful. Of course, people are only going to post if there is a problem, but it would be nice to read something good about this drug.

[whitedog]

Hi

I've been taking it since 2018.

Everyone is different but, apart from upset guts for a while at the beginning, I've been fine with it. No nausea at all. And I haven't needed the Lansoprazole every day that I did on MTX. Occasionally I get a bit of acid reflux but I just take a Gaviscon tab.

I started on Rituximab infusions last summer after a big flare up of everything so not sure if it's still as effective. Still on it till I'm told otherwise though.

Expect your wee to turn bright yellow!

[virtualreality]

Sulfasalazine is my favourite conventional DMARD! I've been taking it since 2022, no side effects and clear benefits for my RA symptoms. You build up the dose gradually over a few weeks, so it's a gentle start and you can assess any side effects as you go. I really hope you have as good an experience as I have.

[Hopeful1]

Hi. Yes. Been on it since 2011 on triple meds initially with lef amd hydroxy but lef swapped later for metho. Over time dropped hydroxy but effort to drop sulfa (simply because do not like the idea of so many) failed. So sulpha is obviously doing something important for me.

Sulpha is an oldie but for me a goody. Yes, the yellow wee and in summer try to avoid yellow armpits on a white top. A small price to pay for good control. Good luck.

[MistyDay]

I took it for over 30 years with no noticeable side effects. It helped my RA. I could not tolerate leftluomide or methotrexate. I do have tinnitus and some hearing loss, but no idea if this is linked to the medication or would have happened anyway. I have a friend who had very bad side effects on sulphazalazine . It is started with a low dose, with regular blood tests at first, so if any temporary problems they will be identified and the medication will be changed for something that suits you better. All RA meds have potential side effects .You have to try it to see how it suits you.

[Scottishlad]

I got on fine with it, my only issue was that was that it did tend to colour the sweat and urine yellow staining clothes. I was on it for several years eventually as part of the "triple" therapy. I came off it when this became less effective and I started on a biologic.

Remember people will report problems much more readily good experiences.

[Leics]

My experience of sulpha was a good one. I started it at the beginning of my journey. For me no side effects whatsoever and I went from not being able to walk at all or barely with excruciating pain to be pain free within a matter of a few weeks. It was great for about a year or so. Then it stopped working and I developed an intolerance to it. So my advice try it a see it was great for me and I haven’t had any luck with anything else I’ve had since or not to the same extent. Good luck I hope it works brilliantly for you.

[woodstar1]

Hi I've been on it since 2014 with absolutely no issues at all. Different drugs affect people differently, methotrexate for me was awful but for others it's a game changer. The only odd side affect for me is the colour of my urine is now bright yellow!! I can take that, good luck and I hope it works for you.

[jonsib]

I have been on it since 2017 with no issues at all (apart from the bright yellow urine which i can live with). It has remained a constant, when other drugs have had to be stopped for various reasons (hydroxychloroquine, methotrexate and leflunomide). I am going to be hopefully starting adalimumab soon, alongside the sulphasalazine as it doesn't control the RA on it's own. But i am very grateful that i could carry on with it, as even though i have pain and difficulty some days, without it i would be much worse off.

[Boxerlady]

Another happy customer - echo all the previous comments! 😁

[HallidayBottle]

I’ve been on it since 2020 with no issues bar the disconcerting urine which looks like Tango. Pretty much in remission for last 18 months. It seems that people report very different experiences because the effect of sulfasalazine is mediated by the gut biome (which differ widely in people). Some research on this has just been published in Cell see doi: 10.1016/j.xcrm.2024.101431

[Jackie1947]

20 years and I haven't had anything bad about it. Don't believe all that you read. What suits one doesn't suit another. Have an open mind.

[hazelcats]

Good luck Fluff. Its always nervy trying a new medication,especially as you had difficult times with mtx. I love honest 'review's ' from those with experience. The yellow wee is worth knowing in advance,bit of a shocker if you werent pre- warned. Take care

[Fluffontoast in reply to hazelcats]

I was disappointed about the hairloss because I was tolerating Mtx in other ways. Hope you're doing OK x

[Belle76]

I’ve been on it for 20+years it’s one I can tolerate, keep your self hydrated, up your dose slowly.

Keeps my arthritis under control with help from Benepali and makes my urine bright yellow 🙈

[Fluffontoast]

Thanks everyone. Have a good Christmas!

[Jimminey]

When I was diagnosed with RA 6 years ago the first drug I took for it was sulfasalazine which after 3 months reduced virtually all the inflammation so that the RA went in to remission. It also helped get rid of the anxiety I had for 3 years previously (which was almost certainly associated with a high rheumatoid factor before the inflammation occurred).

I have had no side effects (except for orange urine which is of no consequence) but I am more susceptible to infections as sulfasalazine is an immunosuppressant. So I have to take care in this respect.

This year I have has to add a biologic (after methotrexate seemed to do nothing except make me feel ill) to my medication as the RA 're-appeared' in force but this is quite usual after some time on sulfasalazine or indeed any other DMARD. Sarilumab in conjunction with sulfasalazine have now got my RA back in to remission.

I am very glad indeed that I started on sulfasalazine.

[Chockyuk]

I’ve been taking it for a few years now, I call it the final part of the puzzle for me. It’s helped tremendously - my 20mg of methotrexate wasn’t enough, so Sulfa was added. I don’t suffer from any side effects with it either at the moment (apart from the orange pee 😂).

I hope it works for you ☺️

[Lester23]

I've been taking it since March 2024, had to recently up my dosage as was still getting pain in my wrists and ankles. Since upping my dosage I am finally pain free after 12 months! Only side effect I have noticed is the colourful wee so I am hoping this will be a long term medication for me! Good luck with your journey but you will need patience as it took 9 months being on it to finally find the right dosage that works for me.