Sulfasalazine stomach problems

Hi All

So 8 weeks ago started Hydroxychloroquine and sulfasalazine and haven't had that bad of a time with them apart from the sulfasalazine has given me a really dodgy belly from when started taking them (won't go into detail too embarrassing) 2 weeks ago at my 6 week check up my dosage was doubled again and it's got worse. I did mention to consultant and he said would settle down at some point. Has anyone had/has the same problem? Does it settle down? And does anyone have any recommendations on what can do to minimise as gets uncomfortable after having it for so long.

Apart from that seems to all be jolly good lol :)

54 Replies

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  • Are you sure it is from the sulfasalazine? I was on sulfasalazine and had no issue. The hydroxychloroquine gave me a very bad tummy. Felt like acid out the back approx 6-8times per day. Got off that and onto Leflunomide. Same issue as with the hydroxychloroquine. I would suggest stopping one drug for a week and monitor your tummy symptoms. I have been told that the combination of these drugs can increase side effects over and above what the leaflet says.

    If you do stop one drug for a week, then the other drug for a week, this will indicate which one is giving you issues.

    Also be sure to let your doctor know that you have done this and what your results were.

    Cheers

    Scott

  • I can never understand why if a drug appears to be causing problems some rheumatologists just add another drug, rather than stop the one causing the problems, letting it get out of your system, THEN starting something different?

    If I eat strawberries & get a rash.....I don't eat raspberries as well...I stop eating the strawberries!

    But then I'm just a simple soul!

  • A simple SMART soul!

  • The reason i have been given as to why they drop another drug on top is because the rheumatological community has found that aggressive treatment at the start seems to send the RA into remission much quicker.

    I found this to be BS because it did not work in my case. I just got sicker and sicker, to the point of losing 52# of muscle mass. Dropped from 220# to 168# in the span of around 7 weeks.

    Oh well, such is life. Now i spend most days at the gym trying to get my legs to wok.

  • Oh dear that's not good :( I must admit apart from the dodgy belly haven't had anything else so just going to perceiver. The only symptom I haven't had is weight loss and if anything the one I actually want and haven't got lol

  • He seemed to just say that would calm down and basically had to pump me with more because I won't take mext as I'm looking to start family end of year so just pumping me with everything else lol

  • Very good analogy !

  • Hi yes definitely that cause it hadn't gone but had gone down a little and then when had 6 week check up 2 weeks ago he doubled my dosage and since then has been pretty awful. :( am just hoping it starts to calm down soon.

  • They are better enteric coated so then are gastro resistant and with omeprazole or Lanzaprasole to protect it.do you take these

  • Hi was given some to start with but he didn't seem to give me anymore. Been taking immodium :( it's so embarrassing

  • I had a lot of embarrassing stomach problems with Sulpha! Again won't go into detail but basically I didn't eat or drink outside my own house for fear of rather explosive effects. IT was bad for about 6-8 weeks, and completely calmed down after another 6 weeks or so. And has been fine for the 6 years since.

  • Thank you. Hoping and praying calms down because like you say it's quite inconvenient lol have been stocking up on immodium lol

  • I had the same problem with sulfasalazine for the first couple of months but it did eventually settle down. I hope it gets better for you :)

  • Thank you :) hoping so just a bit inconvenient been taking immodium lol

  • I initially started on sulfasalazine building up gradually, but like you had bad effects. I can only tolerate 3 tablets per day, coated ones, and had methotrexate added in, now 25mg injection. Good luck, hope it settles down. X

  • Thank you :) I'm hoping so. Apart from that I don't have any other side effects so want to try and perceiver :)

  • Hi I was on sulfa alongside methotrexate day 5 the stomach probs began and didn't let up. Vomiting nausea morning purges and lower stomach pain anytime I ate anything much really.

    Consultant told me after 7 weeks it just was not the drug for me. Getting ready to start leflunomide - need 2 weeks to flush sulfasalazine from my system first! M x

  • Apart from that I seem to be doing okay and they are starting to seem to be doing something so just hoping calms down. X

  • I was put on sulfasalazine and afterwards felt sick much of the time. I rang a specialist nurse and she advised me to halve the dose and take it at night. I have had no such sicky feelings since. But I would seek professional advice before you change anything. Good luck.

  • Thank you :) I want to try stick with them as they do seem to be starting to work. Just bit embarrassing and inconvenient. Immodium has become my new best friend lol

  • Ask your Doctor for Omeprazol you should have been prescribed this to protect your tummy.

  • Hi I was given them to start with but didn't seem to give me anymore so am just hoping and praying eases as they do seem to be starting to work had my flare ups are less severe and only once or twice a week now. So I suppose in a way if means got to perceiver better than flare ups 24/7. If not settled by time see him in July perhaps I'll ask for them as rather embarrassing and inconvenient especially during the work day :0 lol

  • I've had bad reactions to all the dmards I've tried. I had suffered badly from IBS type problems for years before and the consultant said I was just prone to side effects and they do see some people who just can't take them.

  • Hi oh dear that's not good :( apart from that side effect seem to be doing okay

  • Some folks have issues with sulfasalazine. Eight weeks is a long time to have stomach issues!

    I came off the wretched drug. Made me feel awful. At the higher dose I thought I would die.

    If you are sure it's the sulfasalazine, I would go back to doc and tell them you can't tolerate it. Docs do have a tendency to ignore side effects .😡

  • Well apart from that they do seem to be starting to work as having less flare ups. Keep telling myself that perhaps better than the daily flare ups am not sure. Because I had to double the doseage a few weeks ago it's sent stomach into overdrive again. It's just so embarrassing :(

  • Are you losing weight? Is it possible you have an infection?

  • I wish I was that's the only symptom I don't seem to be having and one of the ones I actually want lol

  • Know the feeling. Leflunomide is supposed to make some folks lose weight. Not me, apparently!!😡

    I'm thinking of going on the same diet as my dog. He's a lean nean exercise machine!

    I walk about five miles a day, and I'm still a fat little porker.

    God has a sense of humour.

  • I know it's annoying :( I walk my dog every evening unless physically can't and am not loosing it! I only take steroids when really bad cause I know they can cause weight. Just annoying only symptom of RA I don't seem to have the weight loss lol

  • I try to always have a little something in my stomach to ease the stomach upset from sulfasalazine. Best wishes

  • Thank you. I do try and eat something before but seems to make it worse for me lol

  • I had exactly the same problem on Hydroxy - terrible tummy problems for a couple of months, but have been relatively under control since.

    I found it worse if I took them and hadn't eaten properly first - didn't seem quite so bad on a full tummy.

    If they are working RA-wise that's great, I'd say hang on in there - make sure you always take them after a meal and try taking them before bed.

    It's always a case of finding what works for you - even then things change over time.

    Good luck!

  • Thank you :) I wasn't sure which tablet was but when increased the sulf 2 weeks ago cause my belly to go into overdrive so definitely thinks it's them. On plus side think starting to work. Managed to do hours of gardening yesterday and although had sore knees, fingers, knuckles and wrists it was bearable. Last time I did it I couldn't even pick up a glass after so am optimistic :)

  • That Sulfasalazine. I cannot take that tablet it has Septrin in it when I had that tablet many years ago it had been for something else I cannot take penicillin either it knocked my stomach out something terrible I've been feeling terribly bloated this past few months I'm going to ash my Dr about that hydroxychloloroquine. Which is one of the tablets I take I would prefer quincie tablet for cramp as some nights my toes refuse to straighten out very painful Tried tonic water any suggestions. ?

  • Do you take steroids when needed? I also find naproxen does take edge off but usually have to take 500mg rather than the 250mg. I have to say despite stomach problems mixture of sulf and hydrox is starting to take affect still sore when do things but more bearable! I am going to go back to perhaps taking omeprazole as I think they do help. I also think a steaming hot bath helps as relaxes my muscles and helps before bed. I find has to be so hot makes me look like a lobster though lol also find any red or black fruits seem to be good for inflammation.I'm quite new to RA only diagnosed a couple of months ago so still trial and error :)

  • I was feeling loads better with just mtx but CRP showed no drop in inflammation hence sulpha. I can't take NSAIDS at too high a dose - wobbly tummy but the omeprazole sounds like a good move. I'm a newbie to all this too but considerably more ancient. Get better soon x

  • It's day 6 on sulphasalazine. Apres moi le deluge!

  • Hopefully it helps you :) I've found that and hydrox is starting to work and although takes sulf about 12 weeks for full effect finding it helping so far. Fingers crossed for you! And don't worry if you get yellow/orange urine does come as bit of a shock at first lol

  • Thank you Tara. It's very kind of you to respond. I was on 25mg mtx before sulphasalazine was added in and really, really hope this mix works. Yup, I had read about startling wee but thanks for the heads up. I sincerely hope it works for you too. Hugs

    Jan

  • Thank you :) they wanted to put me on myx and I refused as want to look at starting a family end of the year so put me

    On the sulf and hydrox (such long medication names lol) just stay positive I do honestly believe it does help to not get down in the dumps about it. Rather than succumb to it fight it :) does make all the difference :) I really hope they work for you too :)

  • they started me on sulfa last September and i have never settled - food up, down, all around and foul foul taste. That's what began my diet trials 4wks of no alcohol, then gluten then meatfree then dairyfree, to see if RA improved. Sinus probs and bloating disappeared when dairy free which was impressive - but RA still a [several] pain... foul taste and things tasting odd still with me so i'm slowly reducing ssz [sulfa] . down to 1 a day, 2 at nightand will give it another week b4 ringing the helpline here. As i said recently,Spanish sun, sea swims , fish inc squid n octopus went down well and falafels killed the sour taste for abt 10 mins just.Not a happy bun tho going back to seaside village again in 2 wks for more relief. I wish you better health xx

  • Oooo interesting about the gluten free I might have to try that I prefer the Spanish sun bit might just have a long holiday there lol. So your still getting problems with the sulfa? Have you tried omeprazole as well? Wish you better too :) xx

  • Waiting for appt but cd be months so just cutting down ssz. Will look up omeprzole tho. a. None of my exclusion trials had any effect on RA except dairy on sinus n bloating LOL. Mini hols 1 wk every 4-6 wks highly recommended but then i'm ancient and few repsonsibilitiesLOL xx

  • side effects of omez... are diarrhoa, gas, vomiting n other stomach probs - think i prefer my recipe !! xx

  • Haha :) I had omeprazole to take with my naproxen as they were given me a dodgy belly too. To be honest I think it's my stomach just seems to not tolerate some medications and things :) I think going to suggest to the boyfriend to take me on holiday every 6 weeks, it's for my Health after all ;) haha. Apart from the stomach thing I feel quite positive. Did some gardening yesterday and today and last time I did that I couldn't pick up a glass or cut my food up. They have been achy along with knees but bearable. I think positivity helps just think have to fight it and live each day as it comes. It's the tiredness and fatigue that I struggle with! Trying to stay awake at work is a massive effort! We will get there just have to stay positive and fight it all the way :) xx

  • Good idea, work on it/ him! I HATE having my food cut up 4me find it demoralising - probably why i prefer fish nowadays. Yep, have to be +ve but my Pollyanna is a bit tired - bet don't know her u sound too young lol. check out Pollyanna syndrome :}

  • Fish is good though all that omega 3 :) I have just read it sounds quite interesting :)

  • Not jealous. Not jealous at all. Signed the Big Fibber

  • PS!! 1 daily now halfway btwn plain food then 2 at night [btwn oatcakes]. MTX damaged me so don't know where i go from here, ankles swollen again , hands wrists v weak and elbow bursa with another developing.

  • Wishing you better x

  • Really couldn't tolerate sulfasalazine. Never got past 1 tab a day for 3 days before the tummy pains got too bad. Stopped for a few days then tried again and same thing happened. I was supposed to be ramping up to 4 tabs a day. I know some people can tolerate this drug but I couldnt and the bright yellow wee is a bit disturbing! Rhumatologist told me to stop taking it and eventually got me on Humira which is fantastic (for me at least)

  • I am also on both. I started on sulfasalazine approximately three years ago and was put on hydroxychloroquine a year ago. I, too, suffered with a dodgy, painful stomach, sickness and loose bowels. My Rheumy said I should be referred to a gastro person, but I decided to half the hydroxychloroquine dosage so see if it made a difference. It did!!! I am a lot better and no longer suffer the nausea. I still get loose bowels first thing in the morning, but can cope with that.

    All the best to you :)

  • That's interesting thank you! I was adamant was Sulfasalazine but now starting to wonder hmmmmm. How have you been on both? Did they work well for you?

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