NRAS
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Ra sufferer

Hi all I would like to know the experience people have had with sulpasalazine did it help did you have to take anything else what side effect. If any were they ttemporary also I would like to know if anyone else is on this site from australia

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Most days I don't need additional pain meds. Except if my ankle flares then no med anyway

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Hi

I take 6 Sulpasalazine per day along with one Hydracloroquine. I also take other pain relief. The side effects were temporary and although I sometimes get really bad days it is certainly a lot better than before I took the drugs. Hope it works for you!

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Hi- difficult to tell, to be honest:I have yellow wee lol.... I'm still flaring, after a year off diagnosis, and taking 20mg methotrexate (via injection pens for 13 months) 2 sulfasalazine twice a day (for 6 months) and just started cimzia (2 months in) I don't have as much swelling but all of my joints are sore all day and stiff. Having said that, after having 6 months off work, I'm back full-time.

Good luck with everything 🙂

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I was on it for about a week before being taken off it due to side effects. (Dizziness, nausea and a drop in white blood cells). I also found that my taste buds were affected. I am now on methotrexate.

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Don't be surprised by orange pee......

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Hi rocky07

l know everyone is different so I can only speak for myself l was put on the tablets and was told to take one per week then two per week and so on until i was on four per week. I did get to three went it hit me hard all I can say is I did not know where I was I could fall asleep taking to someone my mind was all over the place and that was only taking three to the people who it has helped good for them for myself it was like a nightmare I hope this is of help and good luck in finding the right medication for you

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Ditto Gameo

But as you can see, some folks do fine on it.

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I was supposed to build up to 6 per day but can only tolerate 3, any more than that causes me sickness and headaches. They then added in 8 methotrexate tablets which recently changed to injection. This suits me better and has made a difference. Good luck X

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Hello Rocky07,

I am also, an 'Ozzie', hello!!! I am on Sulpasalazine + Placquinal. Now trialling 'Methotrixate', which I had resisted. With RA I don't think there is a single drug to help. What you are taking; I had no problem with, and it does help because it is an anti-inflammatory, with little side-affect. The only absolute thing that I know, is that you have the best Rheumatologist that you can. Don't know whether you are living in Melbourne. My specialist is Dr Indi Rasaratnam - none better. Best of luck to you; just remember you have 'company' and are not alone. Dawn

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Hi dawn and thank you for your reply and yes I am in Melbourne and as you know under a public hospital you dont get., to see the same specialist bur I did. See mr rasinratatnim once but dont remember much about him he no longer practices ar the hospital I am under but I have. read a lor of good reviews about him not only that he peactices at a clinic not far from me but you. have to have a referral and I am not sure how tio go about changing from the hospital specialist I dont know if you read my othe. Post bur I have. been researching low dose naltrexone check utube and do yyour research I would like to see mr rasratnim

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Hi Rocky,

Thank you for the tip, will have a look on UTube & naltrexone.

Cheers, Dawn

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I've been on a triple medication scheme for six years now. I started with 3gr Sulfa a day and am now reducing it down to zero by June hopefully. Never had any problems with it and can only recommend it. The big BUT, every person reacts differently. With all drugs, I don't even think about side effects. I am aware of the worst and look out for them at the beginning. My view is, if the side effects don't outweigh the relief I get then I don't care about them. All the very best.

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Hi Rocky07

Yes I was on Sulfasalazine for 4 months after having to give up Methotrexate due to a Lung condition. Had to come off Sulfasalazine due to a really nasty itchy rash on arms & legs I am now on Hydroxychloroquine & so far touch wood everything seems ok for the last 4 months. Hope this has been of some help to you sorry I'm not in Oz but good old Blighty but hope you have a Bonza day.

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I'm starting this treatment today! Hopefully I will be ok an only have orange pee!! Could do with loss of appetite may help lose weight 😑X

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Hi there. It made my liver very unhappy very quickly but due to a hospital error they had not set me up with blood tests so my liver numbers were really quite dramatic by the time it was discovered. Not to worry you because I think that is a very unusual reaction, but just to say make sure they get you having regular blood tests on it.

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Hi diagnosed 2 yrs ago, I'm 3 weeks into this drug & still building up the dose & it's on top of 20mg sub mtx taken weekly which isn't working sufficiently well enough to stop joint damage. Have noticed less pain although still stiff in joints. Cons are that I'm dizzy & nauseous & have a permanent headache from hell and the fatigue has worsened considerably especially after the mtx dose. Not sure if this will even out once I'm up to full dose next week and my body adapts to the drugs. If not I expect I will have to chat through with the rheumy nurse. I hope you have better luck with it!

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Hi,

I was diagnosed only 6 months ago. I only take 4 sulfasalazine a day and the pain has almost completely gone. I am well pleased (although it did seem years, rather than months, before I could see a positive outcome).

The urine colour has changed but other than that I have not felt any side-effects? I live in Wales UK but the sulfasalazine should have the same affect on me over in Austrailia, I imagine.

Wishing you all the very best

Les

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Forgot to say I've been on Sulpha for 6 years now with no problems. First few months were a big hard as gave me a very excitable stomach, but after that was ok.

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Hi I'm from NZ

sulphasalazine and hydroxychloroquine did help initially, but when I saw specialist, he said we can do better and stopped both those and on to Leflunomide...WOW instantly felt so much better! Seems to be a trial and error til they get the right combo. am still on Methotrexate.

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Lots of people do very well on it but it was not for me.I felt so unwell and lost a lot of weight and did not help the RA so it was stopped but you could do well on it so good luck.

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I was given sulfasalazine 500 m four a day two at morning two at night they worked brilliant for me no side effects for six years due to last twelve months being a most stressful time of my life in in throws of a huge flare up again since May last year I still take sulfasazine daily but now I've been put on methotrexate four tablets one day per week into fourth week no signs of improvement yet in fact really bad flare iOS in feet then hands this week renders them useless so not holding my breathe for improvement anytime soon it's supposed to take ten weeks to get fully into your system if I don't get any improvement in next four months il stop taking it

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Hi. Headaches seem to be the worst effect. But I have increased very slowly and only on 3 a day after nearly 2 months. Stabilising on this for a while and no headaches this week. Hoping it improves RA too !! ( did not turn my soft contact lenses yellow but v yellow wee 😳)

Good luck

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It was the first RA drug I was prescribed ..16 years ago.

I was told it takes 12 weeks to know if it will work. I stuck it out even though I was sick every day, couldn't eat anything except bland fish & mashed potatoes & lost a load of weight I could ill afford!

All the time thinking it just MIGHT start to help.

It didn't & since then if a drug has made me ill......I'm off to my Rheumy to change my meds! Nothing is worth feeling that bad........" Just in case"!

Sorry I don't have a happier story to tell you.

AC

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