Is anyone taking sulfasalazine?

Hello,

I've had to stop taking methotrexate twice now due to my white blood cells being low.

Ive been told when I see my rheumy (18th June) I should be put on another drug. So, I've been checking out alternatives on the NRAS. Does anyone take sulfasalazine and can you let me know more about it, how much, how often and what side effects you can get?

Many thanks

Alison

x

17 Replies

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  • Alison, i had to stop mtx due to breathing problems. I see my dr next wednesday so i will see what he has to say. I won't be going back on mtx until my operation is over. I also take sulphasalizine twice a day. I haven't noticed any side effects from sulphla,but my eyesight suffered with light sensativity due to the mtx.

    Hope this is of some help to you.

    sylvi.xx

  • Hi Sylvi

    Thanks for the reply, does Sulpha do the same thing as MTX (slow the desease down)? Do they recommend taking folic acid with that aswell, as I felt very sick when taking the MTX ?

    My eyesight has deteriorated since I've been on the MTX aswell.

    Thanks for the help. Hope all goes well at the dr.

    Alison

    x

  • Thanks Scouser, that really helps a lot. I felt awful taking the MTX , looked and felt like death lol Hopefully I will get on better with the Sulpha too.

    xx

  • Hi there.

    I take sulpha and it works fine for me. Everyone's different, so the only thing you can do with this disease is try things out and wait a few weeks. But it is a disease modifying drug (DMARD) like MTX just that it works slightly differently. It's actually one that's been used for the longest I think. Hope it works for you too. Polly

  • Thanks Polly

    x

  • Hi, I have been on Sulfasalazine for 17 years!! And I have been very happy with it.

    I seem to remember having a faint rash at first, stopped the tablets, then started again slowly. One a day for a week, then 2, then 3, then 4. So I have had 4 a day since 1995. They suit me fine.

    I think they can be associated with slight anaemia, but the disease can cause that too.

    I have heard that some people have reactions to Sulfa. But we are all different.

    Oh, a down side is that your urine can look a darker colour, cos of the sulphur. But it doesn't mean anything. And I have heard that contact lenses can go a bit yellowish too. But compared with MTX effects, I would choose Sulfa every time.

  • As with the other side-effects mentioned, if you wear underwired bras, you may have the same issue as me which is discolouration of the bottom of the bra. Don't know if anyone else has experienced this, but I would imagine as with the urine issue, it's to do with the sulphur in the drug. That said I found it seemed to work better than MTX, although I am on both. MTX was started and sulpha added about 3 months later.

    As everyone has said, side effects are different for each individual.

  • Hi yes been taking sulpha for 12yrs no problems with it until now messing with my bloods, but I take 6 aday. I found my urine is bright yellow and very sensitive to the sun so have to wear high factor or stay in the shade, had to be careful anyway as I have fair skin, but now need to be very careful

  • I have had to stop MTX because my liver can't tolerate it and I have just started sulpha. I am only on a half dose of 2 tablets a day at the moment but I will eventually take 4. So far so good, I haven't experienced any side effects, so fingers crossedI can continue. It will be interesting to get my blood results next week.

  • Hi Alison

    I have been on Sulfa since last June and was fine on it, with no side effects, other than highly coloured urine, until Feb this year, whilst taking 4 per day (although it didn't have much affect on the RA unfortunately). When the dose was increased to 6 per day, I started to notice some side effects - very dry itchy skin (especially the scalp) and a persistent irritating cough - felt like a 'bubble' in my chest that I couldn't shift (I had this also with MTX when it was added in November, but that was much, much worse and led to shortness of breath). My GP today referred me to the hospital for a chest xray to check if the increased Sulfa is affecting my lungs (also become anaemic from last week's blood results) and I will update when I know the results of that.

    I'd say give it a go, because these drugs work differently on each of us, and you may find it's very effective for you - you'll never know if you don't.

    Trish x

  • Thanks to everybody, you have all really helped me, and am feeling quite positive, seeing my rheumy on 18th June, so hopefully will be put on this drug.

    Alison

    xx

  • Hi, just to add that from the various blogs on here it seems that sometimes rheumy's favour one drug rather than another so he or she may suggest a different approach. Which isn't to say you can't ask for it specifically but there may be other suggestions. Everybody's different but there's no way of telling which will suit you best so do keep an open mind. (It's funny I'm so used to orange pee and loads of sunblock that I'd forgotten that it's actually a side effect of the drugs - it just normal now!) Polly

  • Been taking Sulphasalazine for over 10 years and never had a problem. I take 4gr a day. I also take Plaquenel and Mtx.

  • hi ... i have been on sulpha for about 18 months i take 4 a day and with 10mg MTX ...dark urine and dry mouth as you have to drink quite a lot of water with it but its been fine

    debs x

  • hi Ive been on sulpha for 12 years (with a little break in the middle) and have had no problems at all with it. Does make my wee glow in the dark orange though!

  • hi i was sulphaand i had quite a fewside affects like other responses the urine being darker but i also felt i could taste the sulphur and was convinced my breath smelled of bad eggs lol,but my freinds reassured me it didnot but no amount of mint or mouthwash would relieve it, but also the most annoying side affect was vaginal bleeding so much so thati was having to take medication to stop the bleeding, after 12 months i had enonugh and came off it :-)

  • I was same as notsobendy and had a vaguely eggy taste and felt a bit yiuk on it. I had to come off as got lumps on my neck and behind my ears and a horribly itchy purple rash all over so only lasted 3 weeks. But then I'm doing fine on the MTX so as everyone else says we are all very different in the drugs we tolerate. Give it a try it's on a par with MTX in terms of it's effectiveness I believe but not as potentially toxic. TTx

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