Hi all. Please make sure your not eating before reading further!!
I've been experiencing some tummy problems over the last few months. Mainly mild pain, loose bowels etc.
I have also passed very dark stools on a few occasions, and I've lost a stone in weight (and there isn't that much of me to start with!).
I had assumed most of this was a side effect of starting Leflunomide and it would pass. But when it continued after a month I began to wonder if something else was going on.
I decided to stop taking naproxen (and the omeprazole) in case that was causing problems, and whilst I felt the pain had almost gone, the other symptoms continued.
I don't feel particularly unwell and my RA seems to have resonded well to the Lef, but my wife has become a bit worried and insisted I see a GP, which I did yesterday.
She examined me and I'm to provide samples for testing. But they also stopped the Leflunomide which I wasn't expecting and have written to rheumatology to ask for advise.
I have to say I'm disappointed to be off the Lef. I've been taking it about two months and have felt pretty good so far as the RA goes, without the dire side effects I had with the MTX. It feels a step backwards.
Are gastro problems very common with RA? I've read up on Lef and whilst some of the symptoms are similar to known side effects the info is that these should pass after a couple of weeks. It may well be nothing to do with RA or drug side effects.
I just wondered if had others had experience with gastro issues and RA or RA drugs I might learn from.
Cheers - Seb
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Sebastian247
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I've been experiencing some tummy problems over the last few months. Mainly mild pain, loose bowels etc.
I have also passed very dark stools on a few occasions, and I've lost a stone in weight (and there isn't that much of me to start with!).
I don’t know about Leflunimide but with the black stools, tummy problems and losing weight I think you need to ask your doctor for a scan of your tummy area.
On the other hand I was prescribed Naproxen and a PPI three years ago when I fractured my sacrum and I had the worst ever diarrhoea. It was unbelievable. my GP said to stop the Naproxen and to double up on the omeprazole. I did as she said but my gut didn’t go back to normal until I stopped Naproxen and omeprazole. So it could be that but I’d try and get a scan.
Thanks. She mentioned a colonoscopy, depending on the test results. I've had a dodgy tummy again today. I haven't been this light since i was 16, if only I'd kept my flares!!
I've had several bouts of diarrhoea and severe vomiting over the year even before starting meds, eventually so bad I went to a+e with appendicitis, not sure if it was caused by ra. They may have taken you off Lef to help you fight infection rather than due to side effects. Did they explain why? In the meantime, all the best and hope the tests are negative.
I'm probably going to start Lef too because of issues with Mtx. Just waiting for them to discuss with rheumatologist.
It was in case it was side effects. But that's probably because i mentioned side effects. PersonaIly i'm inclined (hoping) its the naproxen which is known to cause stomach problems. I had dysentry years ago and my gut has been easily upset ever since. So maybe naproxen was akways a bad idea for me.
I was really happy on Lef and hope i can restart it. Hope it works for you.
I didn't get on with Naproxen either. Nor ibuprofen. Naproxen made me weepy and angry. Weird but that was in the early days before I saw the rheumy so not surprised I was out of sorts. Sorry I'm digressing. Do let us know how you get on Seb
Hi I started Leflunomide about 11 weeks ago and the first few weeks absolutely fine but the last few weeks i have 1-2 days a week where i have had very loose stools (not any pain) and i have also lost a stone in weight. I don’t really understand how i went weeks without any side effects. How long have you been on Leflunomide?
A bit over two months, one month taking 10mg and 20mg thereafter.My tummy issues didn't start immediately, but after a couple of weeks and were quite mild, mild pain and loose stools but not diarrhoea. The weight loss happened quite quick though.
The more significant issues started after a month or so. More substantial pain, dark watery stools and mucus (sorry, its pretty disgusting..).
But I don't feel particularly unwell and my RA is not an issue.
Its a curious thing. Hope you get back to normal quickly. Are you taking any anti inflammatories?
I started lef about 5/6 weeks ago. I’m on 10mg daily and am really starting to feel like my ra is towards a better place. It’s combined with yuflma and salz at the moment. But I’m in the process of reducing the steroids. I’m still on naproxen as well. I’m finding that I am getting a bit of an upset stomach now a couple of days a week. I’m putting the darkness down to the iron tablets as I’m anemic. I’ve been on the naproxen on and off for years. But not concerned about my stomach. I really could do with loosing a bit of weight thanks to being on steroids for 1 1/2 years.
But we’re all different and we all react differently to everything. Hope it resolves quickly for you!
I saw a gastroenterolgist a few years back who insisted that the leflunomide was what was causing my severe gut issues. Rheumatology were not happy when told this. I came off it. In my case it was not the leflunomide, but leflunomide can cause issues.
I was on leflunomide for about a year a few years ago. I don’t remember having an upset stomach but I did lose a lot of weight while I was on it. Went down to 7 stone. Ended up being referred to a dietician and prescribed fortifying drinks! I was taken off it after a year as it wasn’t really controlling my RA and have been in a biologic ever since.
7st is very light. I'm relievedto here you got through it and are doing ok now. I've reached a new low of 8st this morning. I'm not a big chap but it's low for me. When I saw my GP she had a student with her who was also invited to examine me. On feeling my tummy she blurted out he's a bit skinny!
Made us all laugh! Anyway thanks for sharing your experiences. Seb.
Hope you get some answers soon. I was happy to be losing weight at first but then it just kept dropping off me. I think it is listed as a possible side effect of leflunomide.
Yes, I read that in the leaflet too. and a research paper I found online concluded it was a common side effect of Lef. Great if you want to lose weight but not otherwise. Hopefully the lab tests will clarify what's going on, when things are solid enough for me to provide a sample that is! (sorry!).
Here's a post I did 2 years ago. My diarrhea didn't stop for a month after stopping Leg. Rheumy said it's unusual but can happen. It was awful! I lost around 2 stone in 6 weeks. It's a horrendous drug if you already have or had tummy problems in the past!
Haz58
2 years ago
12 days I've had diarrhea now. Lost 8lb in weight (great but not this way). Done a stool test, one for some bacterial thing is negative, waiting on the rest. GP and Rheumy nurse are pretty sure it's from the Leflunomide I took for only 2 weeks and 5 days. Phone appointment with RA consultant is Wednesday morning not a f 2 f as I thought but good job really. Be interesting to see what she says! I wonder how long this tummy problem will go on...
Well it happened...2 weeks of 10mg of Leflunomide and nurse rang and said my inflammatory marker was up. Take 20mg she said. So for 2 days I did. Yep I got terrible upset tum with diarrhea. Rang nurse on friday she said stop taking it and because of past problems I shouldn't have been told to double the dose 🙄 I was itching a over too. Ive had diarrhea now for a week. Has anyone else had this and how long did the diarrhea last after stopping the Leflunomide?
She also got me an urgent appointment with my consultant and I go next Wednesday.
Thanks for sharing that. That is a massive amount of weight to lose in such a short period. I didn't think to tell rheumatology I'd had dysentery and have a sensitive stomach. But I didn't know about the side effects of Lef at the time.
It was awful I couldn't go out at all. Ive had hydroxy, gave me nightmares, MTX tabs and jabs made me feel awful, lef, can't take naproxen because of my tummy so been on sulfasalazine for 18 months, no probs except possibly a cough, doctors can't decide, plus Benepali jab which is great. I hope you get sorted very soon!
I'm on omeprazol too. Have been for years before RA.
It might not just be one thing but two things together. For instance we know naproxen isn't good for stomachs, that's why they also prescribe omeprazole. Omeprazole though not just lowers the acid in the stomach to protect the stomach walls, this also means that the environment in the stomach is not as acidic and that can allow for a change in gut microbiome.
I had a time when every time I restarted PPIs I got stomach problems. It took a good year before I felt that my digestive system was back to 'normal' after I stopped taking them.
So stopping the naproxen might be helping one part of the problem, and stopping PPIs might help another part of the problem, but they are both doing different things, so it might take different times for different bits to recover.
That is very interesting. The doctor I saw on Tuesday recommended I continued to take omeprazole despite stopping naproxen. Makes me wonder if that's good advice now. Many thanks for sharing that. Seb
If you have tummy problems in my experience I'd keep taking them as they protect your stomach. I need prednisolone now and again and up mine to 20mg if I need to take them.
Yes, best to follow advice, but also you know your own body best. Listen to your body, keep a diary of what goes in one end and what comes out the other along side symptoms. having PPIs for a while while the stomach heals from naproxen might be prudent, but PPIs themselves are not benign and have side effects as well.
note my diagnosis is Adult Onset Stills Disease which manifests as RD. Diagnosed aged 17 in 1979 and drug free by mid 20s except pain relief.
I’m 62 now and early in 23 a bout of new symptoms brought tests and medication into play. I have discovered that long term use of codeine for rheumatoid pain may be the cause of the mild diverticulitis that was discovered. The omeprazole prescribed last year may have contributed to my weight loss as I had loose stools and increased frequency resulting in 16 pound weight loss in 3 weeks. Interestingly the weight has stayed off now Im not taking the PPI although the bowel symptoms remain. I have read that gastric issues are common with rheumatoid diseases.
I’ve had a endoscopy and colonoscopy which found nothing abnormal.
So I don’t have an answer for you just a similar experience without the drug interference which led to a thyroid test this week giving a subclinical result.
Thanks for sharing that. As I've just shared with Cyberbarn the doctor (actually nurse clinical practitioner I think) said I should continue taking omeprazole even though I've stopped naproxen. Makes you wonder if that's right. Seb
I have SOD so suffer from diverticulitis also as well as the acid etc. I was put on MMF in august, when I got on my 3rd tablet of 500mg left sided pain started and diarrhoea, gastro increased Lansoprasole to 60mg and nortriptoline to 20mg to help me cope but since then I’ve had 2 further increases of 500 each and I’m in agony. GI finally rang on Wednesday and told me I might have to stop treatment as it’s affecting my bowel. Spoke to rheumy nurse who advised going back down to 3 tablets to see if I can tolerate if not come off but ring them because unfortunately it’s not that easy for me. The MMF and 5mg steroids have been stopping bilateral pleural/pericardial effusion’s caused by serositis so if I just stop, the fluid will all come back and inflammation will rise again. We can’t win, it’s hit and miss with these meds. Rheumi consultant who’s new did say he thought I was on wrong treatment and should be on stronger which would be infusions so it’s just waiting for him to decide.
Hi Seb, me again! I have a sensitive system and find lots of fruit, veg and especially tinned tomatoes make me looser but red meat and white bread and eggs make it firmer. Are you able to help your situation with diet until its diagnosed and resolved? Sorry if that's not very helpful...
That's really helpful and good advice thanks. Fruit does have that effect on me and spicy food. But I've not taken sufficient notice previously to identify all that makes it worse. Definitely something to look into. Aren't eggs supposed to be good for binding?
Not sure about eggs I guess it comes down to individuals. Many people including me are sensitive to nightshade family e.g tomatoes, aubergine, peppers, potatoes. These are said to cause flares with RA but I think it's anecdotal not proven.
sorry to hear that Lef was helping but you can’t take now. Diarrhea is a side effect as well as stomach pain and weight loss. When I took it I had hair loss quite severe so none of that for me!
Thanks. GP has given me two kits for samples. Not sure why two. GP has also written to rheumatology so hopefully I'll hear something soon. Many thanks. Seb.
It could well be the meds. I was taking Hydroxychloraquine and after a month, same - terrible cramps, loo every 5 minutes, I ended up in hospital as I’d lost so much weight and was passing blood. Anyway I was taken off it and after a few weeks all the pain stopped, but I did have a colonoscopy as they wanted to be on the safe side as my mum had Crohn’s, but thankfully it was all clear. I hope you get it sorted, and at least if you do have further diagnostic tests they can see what’s happening.
Also my son had something similar, he’d been taking strong painkillers and antibiotics for a wisdom tooth infection, we took him to A&E as he was in terrible pain with constant diarrhoea, just came on out of nowhere. The doctor said he thought it was CDiff, something to do with the antibiotics.
Thanks. Just a waiting game now for tests and a response from rheumatology. Sometimes I think I've made a fuss about nothing and other times not. Today's a case in point, I felt fine so went walking the coast path around the Lizard and then sudden desperate need for a bathroom! Had to mince the rest of the way clenching for all I was worth!
Sorry....just trying to maintain perspective and a sense of humour!
Yes I have and it took a year of tests to discover my other illnesses. At the same time I was experiencing dreadful stomach cramps being put down to the illnesses. This went on and on but I asked the RA clinic if I could temporarily stop my weekly injection if Benipali. Almost straight away the cramps stopped and they stopped the Beni.
Thanks for sharing your experiences. A year of tests sounds a marathon. Thankfully you got there in the end. Fingers crossed mine is something benign and easily sorted. Best wishes.
I've had gastric problems ever since I started on RA medication ☹️ firstly MTX, came off that after 6 months due to gut problems. Then Hydroxychloroquine, still had gut problems but bearable with Omeprazole. But, I had to come off hydroxy due to possible eye toxicity 🙄 now waiting for an opthalmology appointment. I've not been on anything for RA for 6 months now🤞however, I still have gut problems! heartburn, acid reflux, indigestion and IBS type symptoms.It's quite depressing 🥺
Sorry to hear all that. It sounds a nightmare for you. I can appreciate Hydroxychloroquine causing stomach problems. I spent time working in Asia and was taking anti malaria tablets which after a while gave me stomach problems and I had to stop them. I hope things improve and you feel better very soon. Seb
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