Sulphasalazine: Not sure if I’ve spelt that right? Just... - NRAS

NRAS

36,425 members45,074 posts

Sulphasalazine

Chockyuk profile image
22 Replies

Not sure if I’ve spelt that right?

Just added to my 20mg of Methotrexate today, does anyone on here have any experience of it? I actually dread asking, as my Consultant said oh could cause stomach problems, rashes etc...... 😔

But I suppose every medication is different with different people, apart from fatigue and the occasional raised liver tests in the beginning, I’ve generally been ok side effect wise on Mthx.

Anyway, I’ll give it a go and see. I didn’t get on with Hydroxy, ended up in A&E with that one!!!

If this doesn’t work, she said she will try a Biologic.

Written by
Chockyuk profile image
Chockyuk
To view profiles and participate in discussions please or .
Read more about...
22 Replies
Boxerlady profile image
Boxerlady

It was added to my Methotrexate and Hydroxychloroquin and has been good for me. Started low and increased gradually. A couple of days nausea with each dose increase but otherwise no problems - apart from the dramatically yellow wee! 😂 I was told that the next step would be biologics if this didn't work but it did; hope that it works for you 🤞🍀

Chockyuk profile image
Chockyuk in reply to Boxerlady

Thank you Boxerlady 😊My Consultant said it might make my tears orange too, as at the moment I’m always crying with one thing or another....that’ll be fun 😂

x

Scottishlad profile image
Scottishlad

I agree with the comments above and will one caution. I found it increased my sensitivity to the sun. I would recommend using high factor sunscreen. I often wear SPF 30 in the UK and 50 abroad. I still develop a tan.

bpeal1 profile image
bpeal1

I’ve taken sulphasalazine for many years with no issues at all. Hydroxychoroqine gave me the most horrendous stomach cramps but I had no gastric issues with sulphasalazine. In fact, I’ve had no side effects at all except having luminous orange wee 🤣, which now I take 8 tablets a day is a very impressive colour. Thankfully though I’ve not noticed my tears changing colour.

Good luck I hope it works for you.

Hopeful1 profile image
Hopeful1

Yes. Metho hydoxy and sulphasalazine for me. I tolerate well. I did try reducing sulpha a while ago but much better with it. There are gastric coated versions available which help some people with sulphasalazine.

Bookworm55 profile image
Bookworm55

Yes I have taken it, with mtx for a few years now and no problems with side effects. Yellow wee is quite dramatic as others have said!

Gymcactus profile image
Gymcactus

Me too, on metho and sulfa but gastric coated ones, no problems for 5 years now.

Sky42 profile image
Sky42

I too had it added to mtx. Gradual increase to 4 tablets a day, a bit of nausea with each increase, ginger biscuits good for this. No effects now and the combination is working for me Make sure prescription is for gastro coated.

Briefencounter profile image
Briefencounter

Yes , me too ! MTX and Sulfasalazine - enteric coated . Have joined the “yellow” wee brigade . Been on both for years , and no problems . Seems to be an RA favourite combination. Good luck 🤞!

dippyd09 profile image
dippyd09

I’ve been taking methotrexate for around 22 years. It may make you a bit queasy to start with but I can truthfully say it has really helped me. I take it with sulphasalazine/hydroxychloroquine amongst other drugs, I’m now taking 25mgs a week. We are all different and react differently so I would say try it and hopefully it will work for you too. I don’t tolerate biologics and have tried 3 different ones but again, we are all different. Hope it works for you.

Chockyuk profile image
Chockyuk

Thank you all for your comments and kind thoughts. Yes the ones I have are gastro coated, I struggle with anything that’s not as I have GERD, even my prednisone are gastro coated, which my GP hates as they’re expensive! Hydroxy made me very ill, I ended up in A&E being tested for Crohn’s as I was passing bloody mucus and in agony. So I hope these work, my RA is in my hip, Methotrexate seems to control the smaller joints, but not the larger joints, I’m suffering at the moment and walking with a stick.

Xx

I took it was several years without any issues, besides the vibrantly colored wee. Unfortunately I was not told this would happen, but luckily a colleague of mine used to take it too ad warned me. You can get a serious scare if you are not warned! Anyhow, I was good on it for several years until I got a bit of a flare up again and the doc decided to switch meds. Am good (probably for a few years again) now on a combination of biological (Tocilizumab) and Methotrexate.

Daisy70 profile image
Daisy70

I’ve been on Sulphalazine for years with no side effects at all. Yes, the wee is more pale for me but no other problems at all. Plus, sun wise, I had no problems and I lived in the Middle East for 35 years! Good luck.

Chockyuk profile image
Chockyuk

Thank you all.

This is why I love this Forum

It’s great to know these things and amazing support 💕 xx

PSAWarrior28 profile image
PSAWarrior28

I've just seen my rheumatologist today and she's prescribed it. I look forward to seeing my yellow wee 🤣🤣. Glad I popped in and saw everyone's comment.

Ali_H profile image
Ali_H

Hi,

You’re on exactly the same route I’ve been on - MTX alone for 7 years then sulfasalazine added last August with the idea of adding a biologic if needed. Sulfasalazine did naff all - gave it until January and then I ‘qualified’ for the biologic (baricitinib in my case) which I started in January and last week I was told to stop the sulfasalazine (still taking MTX and the baricitinib) and things are settling but not back to pre flare status yet!

The whole process seemed to be a hoop my rheumy had to put me through in order to get access to the biologic.... do other departments have to go through such hoops to get their patients on the meds they professionally feel is the correct type of med???

I think if I was a rheumatologist I’d be fed up with having to repeatedly prove ‘I know what I’m doing’ to the local medical council.

All the best

Ali

Chockyuk profile image
Chockyuk in reply to Ali_H

From what I’ve heard from a few friends who have RA, it seems like it. Although one friend was put on Biologics pretty quickly? I’m not sure how she skipped the protocols.

It’s been 4 years for me, but I did manage really well on just 10mgs of Methotrexate until last June/July, then it’s been all downhill since then.

As mine is mainly now in my hip, my Rheumatologist took a nuclear bone scan and an MRI just to prove it was actually inflammatory in my hip, as of course in the large joint there’s not always swelling. She says I’m unusual as my CRP hardly goes up, but my ESR is in the 100’s. She also referred me to Clinical Haematology to look for blood cancer as my ESR wasn’t going down, but thank goodness the Haematologist says it is my RA that’s causing the raised ESR.

I can’t believe how quickly I’ve gone downhill, until I had the steroid jab on Monday I was like a shuffling wreck. But of course I look fine on the surface, as everyone tells me I look ‘so well’...... I’m sure we’ve all had that. 😡

I’ve taken to showing work my letters from the hospital as proof ☹️

Xx

Chockyuk profile image
Chockyuk

Morning all

Just a quick question on Sulfa.

I’m now up to 2 in the morning and one at night, plus my weekly Methotrexate. I’m absolutely whacked, my fatigue is far worse since taking Sulfa, plus I’m peeing lots. Has anyone else experienced this since taking it? I’m assuming it’s a side effect 🤷‍♀️

I had my bloods done last week and I haven’t heard from the nurse, so I’m assuming they’re fine?

xx

jojoishere profile image
jojoishere in reply to Chockyuk

👋 hi chockyuk, I only lasted 3 weeks, on sulfasalazine, made me really breathless, dizzy, and caused stomach problems.More recently started hydroxychloroquine, got up to 2 tablets a day, and exactly same thing happened, ended up at hospital with Gord, Gerd, I'm struggling with most oral medications, I've got a sliding hiatus hernia, so don't no if its something to do with that.

But we are all diffrent so you might be fine. I'm waiting to see my consultant at the end of this month as to what we are going to try next.

I hope 🙏 you cope well on the sulpha, and it helps you take care xx

Chockyuk profile image
Chockyuk in reply to jojoishere

Hi JojoThanks for letting me know.

Same happened for me with Hydroxy, I had terrible stomach issues, I actually lost 9lbs in two weeks, if I hadn’t felt so awful, that would have been a good thing 😂

I am feeling breathless when I walk, I’m not sure if it’s the meds or the fatigue?

I have GERD and a HH as well. I have to use the gastro coated Prednisone when I’m put on it.

I’ve been using Kefir which helps line the stomach for me.

Xx

Lyn-h profile image
Lyn-h

I took it for awhile but was taken off it when I stated getting blood pooling in my ankles, I don’t know why that happened to me as others seem fine with it, it was prescribed with methotrexate and hydroxychloroquine

Morning. I’ve been on it for probably 10 years; all fine.

You may also like...

Sulphasalazine

diagnosed tonsillitis, couple of days later started with rash that I thought was sun sensitivity...

Sulphasalazine

Sulphasalazine

Sulphasalazine Miracle

aches and pains that go along with RA, but I generally feel well. Hoping now that I've posted this,

Leflunomide with Sulphasalazine and Hydroxychloroquine: Toxic?

ongoing basis. I visited my GP this morning who said the instruction to them from the hospital was...