Sulfasalasine side effects

[Fluffontoast]

I started sulfasalasine some weeks ago, working my way up to full dose but have felt awful from around week 2 , with what feels like flu but then eases off then comes back. Nausea, headache etc. Pretty sure it's the drug not actual flu. I have a rheumy follow up tomorrow thankfully. So I'll get chance to discuss it but wondered if this is normal and if it will improve. It's not even helping my arthritis. If anything, it's slightly worse. Disappointing

[Molaro]

I had awful headaches when I started on sulfasalazine, I recall them starting towards end of week two and I slept a lot. Hopefully, like me, you break through the other side and it improves after a few weeks with no more side effects. Make sure you are drinking plenty of water. Hopefully, rheumy team can put your mind at ease and you can continue with it.

[Fluffontoast in reply to Molaro]

Glad you got through it. Thanks for the reassurance

[Gymcactus]

Hi you must drink a full glass of water with sulfazalazine, that was made quite clear when I started taking them and I've had no problems with them.

[Fluffontoast in reply to Gymcactus]

Thanks for the advice

[PoodleT]

hi,

Please keep us posted if you get any advice from your rheumatology team. I’ve been on sulphasalazine since Xmas but I cannot get beyond 3 tabs a day without the side effects being intolerable. Already have had to stop MTX and leflunamide so hoping in time this will settle.

[Fluffontoast in reply to PoodleT]

Will keep you posted

[PoodleT]

Thankyou Good luck with the appt

[Fluffontoast in reply to PoodleT]

My rheumatologist advised coming off the sulfasalasine today.

[MistyDay]

It is a marmite medication. You either like each other or cannot tolerate each other. I took it for 20 plus years with no problems. No visable side effects or ones I could identify it with. However a friend was hospitalised when taking it as it made her very ill indeed. I could not tolerate methotrexate and refused it. My advice is to stop taking it and ask for an alternative.

[Rhianydd]

I hope you are feeling ok. I had a very bad experience on my first dose of sulphursalazine. I had an excruciating headache that led to being diagnosed with drug induced meningitis. I would contact your rheumatologist team just to make sure I was told it was some sort of reaction to the drug. My body couldn’t tolerate it. I hope you get the answers you need and feel better soon.

[AgedCrone]

Do explain to your rheumy how you feel & calmly ask to change meds.Years ago at the beginning of my rheumy journey my then rheumy took one look at me after I had forced myself to stay on SSZ for the 12 weeks he had recommended & said “It’s not worked has it”?

I can’t remember what he switched me to…but for me it was definitely not the wonder drug I was looking for - but many here do have great success with it. I hope your rheumy offers you something else.

[Fluffontoast]

Just seen the rheumatologist and he said my side effects are not typical and said I should come off the sulfasalasine. Because I'm seronegative and not currently flaring, he suggested trying a period of no meds, with a steroid back up plan in case it flares again. Will keep you posted! If I need a new med, he's going to try me on Lefludomide. Have to go back to the knee surgeon with the dodgy knee because the rheumatologist says it's not an inflammatory problem. (Knee surgeon told me my knee problem was still inflammatory! Being passed around)

[hazelcats in reply to Fluffontoast]

Blimey Fluff what a time you are having with meds intolerance. I hope the break from meds may give you a little time to regroup. I guess they want your system clear of current meds before commencing the Lef?Incredible that no one is willing to diagnosis your knee problem and take some form of responsibility and action the right further treatment. 😠

[Fluffontoast in reply to hazelcats]

Yes it's a bit of a saga but hey ho. Hope life is good with you.

[hazelcats in reply to Fluffontoast]

🤔 I was kind of hoping 2025 might be slightly less eventful for both of us to be fair... Least you are keeping on top of things and ensuring the rheumy team are listening to you and willing to alter things when they arent suitable.Just need to get the right teams working on your knee now. Take care and let us know how it all goes

[Lolabridge]

It doesn’t work for everyone and can make some of us feel very ill. Let your Rheumy team know now what you are experiencing and ask for advice.

I struggled on with it for too long as had been told to “give it a chance to work” and ended up in hospital for 10 days!

[Fluffontoast in reply to Lolabridge]

Sorry to hear that. What did you experience that led to the hospital stay? My rheumatologist has just this morning advised me to stop taking it, after 3- 4 weeks of feeling like I have flu!

[Lolabridge in reply to Fluffontoast]

I felt like I had flu but my breathing was affected. I was told to go to A&E and was admitted with suspected Sepsis! Lots of intravenous antibiotics needed to sort me out and it took a while to recover fully.

I’m glad you contacted your Rheumatologist and were told to stop taking it. Hope you feel better soon.

[Fluffontoast in reply to Lolabridge]

What a nightmare for you! Glad I've stopped it. Starting to feel less groggy even after 24 hours of stopping.

[Lolabridge in reply to Fluffontoast]

Glad to hear that!

[Jakey2020]

I had sulfasalazine at first but felt really sick and ill.. tolerated methotrexate better..

[Fluffontoast in reply to Jakey2020]

Same, I was ok with Mtx but after a few months my hair was falling out, so they changed me to sulfasalasine. I've stopped that since yesterday. Feeling slightly better already!

[Neonkittie17]

Good luck with your appointment. Unless you’ve got severe side effects or allergies to it I feel the rheumy will keep you on it for 12 weeks to assess how it’s working on you. I felt improvement after 8 weeks and continued to feel so much better and stayed on Sulfa for around 7 years. It can be very frustrating re itchy skin in the sun. Urticaria Solaris. You often need to cover up on sunny days and wear a high factor SPF/ sunblock. I hope it goes well for you and yes it made me nauseous at first but that wore off after a couple of months. x