Hi, I've had a diagnosis of MCAS, but I had an argument with my rheumatologist because I don't beleive it explains my muscular and breathing problems. Because of that he grudgingly agreed to myositis testing (for dermatomyositis). In the course of writing to him today, I discovered entirely by chance that Omeprazole can cause myositis as a drug reaction. Drug reactions are my MCAS speciality - my body loves to react to drugs - and I have been taking Omeprazole for more than 11 years.
It is both thrilling and horrible to think what might actually be wrong is that I've been having a drug reaction to Omeprazole for years in the shape of fatigue and muscle pain/weakness and just didn't realise it. The downside, apart from years of unnecessary pain, is that it may have done permanent damage.
I have the additional problem that really I need to change to H2 blockers and can't get any anywhere. I've asked my doc if she can find some for me, but I'm not holding my breath. Looks like I'll be reduced to Peptac Liquid.
Has anyone else ever had a drug reaction to Omeprazole or had myositis and not made the connection? I'd love to hear from you so we can compare symptoms!
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Chancery
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Wow. I'd never heard of that one (or else I'd already have told you about it!) but it sounds so likely given your reactions to medication. I hope that not too much damage has been caused and that it does mean you will get some more answers and make some progress. Well done xx
Hello, my darling girl! Yes, I was given a great link to a site for myositis support by a sufferer and there was a little box of 'other things that cna cause myositis-like illness' (it was called something like that, but better!) and it had a list of drugs that cause "toxic myopathy" and there was omeprazole, nice as you like. Of course, it may not be the culprit, but I went cold turkey and just stopped them. Waiting for my doc to get back to me to see if they can find an H2 blocker for me (Ranitidine was withdrawn a while back because of fears it was carcinogenic and all the others have been hit too). I'm trying to get by with stupid OTC type antacids. I'm hoping my doc hasn't forgotten me or just dismissed it. I seem to have been plagued to death recently with docs ignoring me and just not doing their jobs. Covid has a lot to answer for.
That put a big smile on my face! Hello!! Didn't know that about Ranitidine. That's the only one I had, and it wasn't for long. It is pretty sad that I hope it is the Omeprazole, just so you can feel a bit better. Any chance of my trusty Quercetin helping if you need an H2 blocker - it should calm the histamine and therefore the acid, hopefully. Fingers crossed doc gets on the case for you xx
I've been taking Quercetin, and I'll confess only yesterday I was thinking I'd let it and the magnesium go again because I hadn't noticed any difference, then I realised that I hadn't been rubbing my eyes like mad all evening, nor rubbing my nose fit to break it, so I think the quercetin will be staying a bit longer!
Got a message from the surgery last night saying the doc has put a prescription through for me, but the receptionist didn't know what it was for. She said, somewhat worryingly, that the doc said if my pharmacy didn't have it I could try another one and se if I could get it elsewhere. I'm just hoping it's not Ranitidine because I won't stand a chance of getting that - plus I'll be REALLY cross. (I researched which H2 blockers might be available currently and sent it to her - I'll be really annoyed if she's just ignored it.)
I haven't heard of this being a reaction before, but maybe you'll hear of others in your situation. I'm sorry this has happened! I've been on a PPI (Lansoprazole) for more than 20 years and so far ok (have mastocytosis). Hopeful that it resolves for you!! xx
Yes it does happen, apparently. Plenty of mentions on Google and Pubmed. The trouble is, aches, pains and fatigue are not something you notice, per se, if it creeps up on you slowly. I really hope it does prove to be the culprit because then I might actually get, at least a little, better.
Thanks for sharing your experience, Chancery! And I'll keep my ear out for others in this circumstance! Very much hoping it's a passing problem for you!
And here's a link for the "Diseases with symptoms similar to myositis" where I found the info about Omeprazole. Quite a lot of drugs implicated so might be useful for anyone on here who is having difficulty being diagnosed, or suspects something else might be going on. I imagine, also, if you've been diagnosed with myosotis these might be drugs you want to avoid, if possible, in case they make things worse for you. :
I read your story with interest. Yes I had a major drug reaction to Omeprazole. I wasn't diagnosed with myositis but I did have muscle pain and weakness while taking Omeprazole, that could easily have been diagnosed as myositis if I had sought a diagnosis. I had many other reactions to Omeprazole as it affects all systems of the body. It affected everything!
It was the Omeprazole that led me to have MCAS. A combination of factors: it totally messed up my digestion and when I eventually managed to get off it my gut didn't work. Plus, during the time I was trying to get off it I had such horrendous acid rebound that I had to stuff my face with really filling foods like bread and cake to absorb the acid, which further disrupted my gut and microbiome. I then did a gut repair diet which I didn't realise at the time was high in histamine which triggered Histamine Intolerance that then developed into MCAS. Closest I have to got to a diagnosis is 'non IgE mediated allergies' and TILT (Toxin Induced Lowered Tolerance). The muscle problems went when I stopped taking Omeprazole but the gut didn't return to normal.
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MRI with contrast dye
over the counter antihistamines 
Serum tryptase blood test
Systemic Mastocytosis and Ehlers Danlos Syndrome hypermobility. Does anyone else have this combination of diagnoses 
Any one help with a consultant who would see me for mcad 
