I wondered if any of you have experience of taking both these meds? I’ve recently been prescribed Domperidone for oesophageal spasms, nausea reflux etc. only when needed for limited periods. I’m inclined to try it as my rheumatologist has suggested it and he is the expert but my GP has warned me of possible heart side effects because I take hydroxychloroquine (only 200mg daily). I find it quite disturbing he tends to scare me off things rather. I suppose it’s his job as he is signing the prescription and I’m being over sensitive. It all gets a bit wearing sometimes as none of us want to take these things.
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Halfwayuphill
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Yes that did cross my mind but I wonder more if it’s the way surgery’s are rewarded by the CQC. Mine is outstanding but a lot of it is safeguarding. I don’t think it helps they are under time pressures either. I’ve not physically seen my gp since the pandemic just phone calls and emails. I think the relationship has suffered. I see the nurses and a very nice lady doctor. Who knows! Thank you for replying.
I don’t think it’s the GP’s place to scare you? I’m on Mycophenolate and Domperodone x3 daily and, although I’ve had heart checks for other reasons, no one has checked due to Domperodone or seemed concerned. My GP did voice similar concerns about Ondansastron - which my rheumatologist requested. I decided not to take it due to constipating side effects.
At the end of the day this is why people with GI involvement from systemic sclerosis should be under gastro as they should know more about the potential risks v benefits of drugs like Domperodone and Ondansetron. It was my GP pharmacist who put me on Domperodone as I’m not yet under gastro. For me it only works if I take it regularly along with a special mostly liquid diet.
Thank you OldTed60. Yes I’m under a gastro but I asked my rheumatologist about this problem as I’m not seeing the gastro until January and have recently had heart checks. It may be my gp had prescribed metoclopramide but I was worried about that as so many on this forum and lupus had muscle twitches and worse. I suppose even though rarer if you get the heart reaction could be fatal. I was more concerned about combining Domperidone with hydroxychloroquine. Luckily I go through phases with the spasms and have changed my ppi so perhaps this may help.
I take hydroxychloroquine, and have taken it for about 7 years, with no problems. My rheumatologist (at the royal free) says it is one of the drugs with the fewest side effects, you just have to have your eyes tested annually. I was also prescribed domperidone, and he did not tell me about any interactions, but i decided not to take this myself after reading the side effects.
Hi Pinkcat26, yes I’ve been on hydroxychloroquine for many years and I think I may end up doing what you do. I know when I have these spasms they don’t last so perhaps I should just suffer it. I did think it might help with slow transit and my SIBO (I take rotating antibiotics) but they didn’t prescribe it for that. Yes I go to the Royal Free also (for over 20years!) and I’m very happy I can do that. Thank you for your message
Hi can I ask which antibiotics you're taking? I have SIBO and am doing well with antibiotic treatment, but some haven't worked as well and coamoxiclav massively impaired my liver function. I'm currently on oxytetracycline, rifaximin and vancomycin. Are you on any others? Thanks and good luck
Hi KatieAnna, yes I’m on Rifaximin, Cephalexin (this one is useful as I get regular UTI’s), Augmenting occasionally. I’ve also taken Metronidazole and Ciprofloxacin. The latter worked well the first time I took it but was warned by GP could cause tendon problems. I took it second time and had problems with one ankle and leg but not sure if it was auto suggestion! Gave it up just case. Only taken Augmentin once but was ok. Metronidazole causes othe problems with sensitive bladder and different gut stuff. I can’t take any tetracycline’s as had allergy in my 20’s. My brother was allergic too and had MS. Thank you for your message and good luck too
Thanks so much. I'm just making sure there are more choices as I'm finding vancomycin a bit challenging from a bowel point of view, but otherwise the treatment has made an amazing difference to me. I hope it's helped you too. X
I don’t think Hydroxichloraquine is high heart risk is it? Domperidone supposedly is a drug that can cause heart problems for anyone but if you’ve had ECG before and get these done as part of your rheumatology checks then I would think your rheumatologist has weighed up the risk versus benefits already. For me Domperidone has been a godsend medication as I didn’t like the neuro side effects associated with metaclopramide.
I was taking 3 domperidone a day 30 mins before meals/ snacks/ shakes but now often only have to take it once a day. If I don’t take it then each nibble causes the loudest noises and the intense gastritis pain in my stomach returns.
I’m a bit suspicious of GP’s overriding a consultant’s wishes - just wonder if it’s cost related? They can usually run ECGs in most practices so perhaps worth querying this with your rheumatologist. I get a few medications and treatments off licence direct from my hospital or dietetics department when my GP says he can’t prescribe them himself.,
Yes I get Rifaximin from the Royal Free as my GP’s practice couldn’t prescribe. I’ve just had at the royal free heart checks. My GP has prescribed the Domperidone but wasn’t too happy. I don't think hydroxychloroquine is risky for your heart on its own. It’s just mentioned on drug interactions as increasing the risk of heart side effects of Domperidone. I can really see why you take it and I wanted to because of its pro kinetic effects as well as stopping spasms but Prof Denton has only prescribed it for during spasm attacks. I also thought maybe I wouldn’t have to take so many antibiotics as slow transit seems to cause the bacteria overgrowth. Wishful thinking perhaps. I may shelve the Domperidone until my visit to the gastroenterologist. Thank you OldTed60 and I’m glad Domperidone has given you some relief.
I’d put my faith in prof Denton (I have major dr envy there!) over a GP any day. Domperidone didn’t do much for me as and when as I was in constant Gastroparesis flare up at that stage. But I asked on a GI motility forum why I was still feeling so darn sick and in such pain and the admin said I needed a prokenetic all the time. X
Yes you are quite right! I am very lucky I see Professor Denton and would always trust him. I can see there may be a time I need to take a prokinetic all the time as already get periods of dreadful nausea and extreme weakness. Lessor f two evils and quality of life is what counts really.
Hello, Halfwayuphill - I've been taking hydroxychloroquine for years without problems. I'm also prescribed Domperidone and only take them as and when necessary. I also take micophenolate. To date I've not had a problem with them. My GP has never said anything about side effects. I think it's good that your GP is careful when prescribing medication. I can understand that this is worrying for you. I'm resigned to the fact that my understanding of my condition and it's associated complexities is a bit of a minefield. My GP seems to take little interest and leaves it all to hospital consultants. GP has even told me he knows nothing about systemic sclerosis, scleroderma etc and then it's end of conversation. Having got all that off my chest I've not been of any help to you - sorry. Good luck with your search for helpful information.
Sorry to hear that amc282 - I'm always tempted to tell my GP to Google it but I'm not that brave. Thankfully there's plenty of kind people on this website who will listen and help where they can. If you go to the SRUK website you can send for their very helpful leaflets about all aspects of this disease. Keep as well as you can and try not to worry too much. x
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