Hi, I've had a diagnosis of MCAS (Mast Cell Activation Syndrome), but I had an argument with my rheumatologist because I don't believe 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. (Autoimmune tests always come up negative for me). The downside, apart from years of unnecessary pain, is that it may have done permanent damage.
Has anyone else ever had a drug-induced myosotis from Omeprazole or had any drug-induced myositis, or even have myositis and not made the connection to PPI usage? I'd love to hear from you so we can compare notes!
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Chancery
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I have statin-induced necrotizing autoimmune myositis. Cause by taking statins, as the name implies. I am on Lansoprazole cause I take a lot of pills, but only for the last year or so.
Sucks when the cure is as bad (worse?) than the disease. If one more Dr. tells me "Statins save lives" I'll scream.
I had been referred to neurology by my rheumatologist after experiencing for years and the immune suppressants I take for another disease did not improve my muscle pain and discomfort, went through all the tests, MRI, spinal tap, blood tests, muscle biopsy in upper arm, and nothing has come back for myositis, but the neurologist has been very good and believes I do have issues but has not got the answers and says I might never get answers. The neurologist believes I do have a type of migraine that affects my head, neck, shoulders and arms, I was put on sodium valproate twice a day about a year ago and I have felt much better than I did though not fully.
I did used to take Omeprazole for years and when I decided to come off it it was because of everything I read I felt better coming off it. I also used to take Amitriptyline for 9 years and again felt that this drug masks problems and took 6 months to wean myself of it.
Hi ChanceryI usually do so much research before I go anywhere and I feel she was overcome when I continued to bounce things off her, when she discounted one thing I asked for an explanation and what else she was going to do and this is how it has gone on. I think she was completely dismissive of me at first but I like people to explain and so does my husband who attends every appointment with me, I attend every appointment with an agenda, I take a list of questions and give the consultant one too, just like I would do in any business meeting only I am the focus of the meeting. I had the electromyography and nerve conduction study carried out and then a muscle biopsy, I then kepr reading the drug I was taking was also prescribed for myositis issues. I
decided to contact 3 consultant clinical neurophysiologist in the hope they would answer a question about whether my test results could be affected by my taking this medication 2 answered saying yes. I also enquired about my muscle biopsy and the same answer came back saying yes and that you should stop taking the medication for at least 3 months before the biopsy... and yet no thought was given about this before I had them done... I have not seen the neurologist since just got letters saying all ok and will have a video appointment with me likely January, I find it very odd how these things are not taking into consideration first.
You sound like a great advocate for yourself, Gillian. I really admire that. I do the same thing with my research but I'm not so good in face to face situations. I tend to give them too much authority. My most recent consultation with a rheumatologist, that I waited almost a year to see, was a disaster. He didn't even make eye contact. He was soft-spoken with quite a strong accent and was wearing a mask so I only caught every third sentence. He just sat and talked to his computer and did a tick-box run thorough of all the autoimmune symptoms, then a bit of physical examination then he handed me a leaflet on fibromyalgia. I actually had to ask him if he thought I had this and he said yes, then he told me about MCAS, from the computer again, and sent me on my way. It was awful. He never once asked me anything about what I was actually experiencing. I never spoke, just yessed and no'ed him.
It then turned out, 2 months down the line, after I chased his report over and over again, eventually having to phone the hospital, that he HADN'T diagnosed me with fibro, he was just giving me the leaflet for suggestions of how to treat the pain. I only found this out after I wrote him an irate later. A couple of weeks later I wrote to him again becasue I'd suspected I might have myositis but he never gave me a chance to tell him at my laughingly called consultation, so I wrote to ask him. He phoned me up and gave me a telling off and told me I needed to stop writing to him and just go to my GP. I lost my temper and said "What, and wait another year?" I told him I didn't appreciate his tone and that I didn't want to be sending him letters. He agreed to give me an EMG and an MRI and that was that.
I was so angry I wrote him loads of letters that I didn't send but ended up sending him a third letter - I hope that really annoys him - and told him in no uncertain manner what I expected of him and how appalling his 'consultation' had been. I've told him that I'm happy to lodge a formal complaint if he doesn't want to do what I ask re tests. I may well find myself thrown off the NHS, if they can do that. I was just SO angry at the whole thing. They make me wait a year and he can't even be bothered to talk to me, then he tells me off for writing to him for more information? Unbelievable cheek!
You've hit the nail on the head to my experience. you wait in hope of help and diagnosis ,I waited four years to see a neurologist yes 4 and 'consultation ' is not a word id use for the appointments in nhs nowadays and walk away feeling worse than I did going in. No chance to speak just answer a few questions, the get clinic letters far from what is true and told ok when far from ok tossed between neurology and rheumatology who look at notes and history only from years ago and end up mentally drained and health worsening. Are they working to government say so? a lot of us seem to be treated this way and lack of diagnosis and help seems to fit with government savings and killing nhs and I dont know nowadays where you'd find aa doc worth their salt. so many reasons not to trust and when treated so infernally it leaves many questions. If you are assertive you're an awkward patient and when made to feel crazy though very clear symptoms it is demoralising. I also have to fight for help alone I
Hi Chancery Never allow people to not make themselves clear, simply say I'm ever so sorry but I cannot hear what you are saying would you mind if you could speak a little louder, also repeat to them what they have said, also say I do not understand can you please explain, even if you do understand, buy time and force these people to do there job. And always start a meeting off explaining why you are there even though you know you have been referred and they are supposed to read your notes... I am very pleased you wrote to this nasty person and you stuck up for yourself both in writing and on the phone, you are the only person who can do this and you have to fight your own corner at every step with so many consultants. I recall an awful experience with a rheumatologist very similar to yours and I did exactly the same, wonder if it's the same one... waited over 6 months for a private appointment and told me I had fibro and costochondritis, and then I saw an NHS rheumatologist and finally after suffering all my life, well from my mid teens, I was diagnosed with Behcet's, when I asked the earlier rheumatologist about my oral and genital ulcers and why I got these as well as all my other issues mainly at the same time he just said he had no idea and they had nothing to do with fibro and costochondritis... and yet at the same hospital that he works at in the NHS in the same department who looks after the less than a handful of Behcet's patients is rheumatology!
The electromyography and nerve conduction study tests are absolutely fine I really did get nervous about this but I kid you not it was just simply a little unpleasant.
Thanks, Gillian, that's really reassuring. I'm using this last consultation to learn to go in on the aggressive end of assertive from now on. I find confrontation to people's faces very hard, especially 'authority' figures, but I need to start realising that they are not my friends, that they are there to do a job for me, not the other way round. My obnoxious rheumatologist actually had he cheek to say to me he only worked part-time and didn't have the time to deal with 'all my letters' - all two of them, how taxing for the poor soul. He seemed to be under the impression that I needed to work round his schedule rather than him working it to best serve me.
Thanks again for lending a listening ear. I don't have a significant other to reassure me or to give me back up so it's always good to know that other people think consultants can take the mickey and you're not crazy and imagining things when they behave badly.
Yes, MAuk, in my brief search on Google and Pubmed, I noticed it was VERY common for people on Statins and a PPI to report myositis issues, and that Statins on their own seem to be able to do the same thing. I've read a lot of adverse criticism of Statins - I marvel that they still advocate a drug that seems to have so many, and such serious, side effects. And I know exactly what you mean about docs; I've had one too many run-ins with doctors' stupidity in the last couple of days. I'm not sure I'd save one if they were drowning.
I have no diagnosis but statins seemed to be involved as when allmproblems started they stopped them and im left with multiple problems. I will scream with you!
Hi Chancery, yes! I have been convinced for a long time that Omeprazole caused or triggered my Myositis. Back in 2013 I had a Well Woman check at my GP surgery, the results were that my haemoglobin was lower than it should be. My GP felt it was due to me having been on Dicolofenac for years and maybe I had a bleed in my stomach lining. He stopped the Diclofenac and started me on Omeprazole. Within 2 weeks I developed rashes in my knuckles and sore patches in my palms, then really bad upset stomach, fatigue, seriously painful joints and then after a month or so breathing issues. I stopped the Omeprazole as I felt it might be due to that although my GP said no. Then about 6 months later I was properly diagnosed with Amiopathic Dermatomyositis with interstitial lung disease.
I have mentioned my thoughts on Omeprazole several times over the years to various consultants but have been told that it couldn’t have caused it.
Prior to taking it I worked full time, had 2 dogs that were walked each day, looked after grandchildren regularly at weekends and was a very busy person. Within a few days of taking this drug I started to become unwell. I had never been ill apart from childhood diseases and a hip replacement.
I’m so glad I have found your post, do you have a link for reference with the information you found out - I would love to see it.
Hi Steffi, I'm afraid I posted this a couple of months ago and now have NO idea where I saw it. However, I do know I Googled it and I looked it up on PubMed. I remember distinctly there was a paediatric case of a young boy who had been put on it (I can't think for the life of me why now!) and myositis had occurred almost instantaneously in him. It was a paper about him. If you Google Myositis & Omeprazole you should find stuff on it.
I've been all-cleared for myositis, I don't have it, but just in case it's of interest to you, I stopped the Omeprazole about the time I wrote this. I took Famotidine briefly (an H2 blocker) but felt I was getting too many side effects so decided to wean myself off entirely. At first I used OTC Gaviscon and Peptac liquid (you get terrible rebound pain when you stop Omeprazole etc) but I realised I needed to change my diet so drastically altered how often I ate and when I ate. I also dropped a lot of carbohydrate out my diet.
I've seen a HUGE improvement in my oesophagitis, obviously, and now don't take anything, but more importantly I've seen a marked drop in muscle pain, mostly in my legs. I've also seen a HUGE improvement in breathing issues, muscle weakness and fatigue. Loads of other benefits, sleep-wise etc, but they are probably not of interest to you.
Unfortunately it's not a 'clean' experiment because I also changed my diet quite drastically, but it's possible the no Omeprazole has played a part, and possibly the no reflux meds at all. Might be worth doing a similar experiment for yourself. Best of luck, Chancery
hi chancery! When I was really ill, my cholesterol was off the scale high! My doctor put me on statins. Worst thing ever! I was in so much pain, muscle weakness etc. I couldn’t function I came back off those terrible drugs after a week. But I’m pretty sure having read up about it since that those f ing statins did so much damage to me and my muscles. I’m convinced of this
I tend to feel much better on the mornings I don't take pred first thing. I don't think it's helping me in the long run at all but can't find a consultant to suggest anything better
I have just joined but these posts are very old ….and as I read through I can’t help but notice that no one has thought that possib,y these awful “mysterious” symptoms are due to prescription drugs…….I started to developed all these symptoms too but it only began after a normal flu injection many many years back…..I am still allergic to many medications s……but my main point is that I was finally diagnosed at Southampton by a specialist who finally told. Me that my central nervous system was damaged possible due to a vaccination……I’m no doctor but logic tells me he was right……I havnt got better either. Just pointing out that no one on here has found a cure….sadly has any doctor/specialist….. good wishes to everyone on here…… just to add……..I’m am allergic to almost all prescription “drugs” also - but never was before this mysterious illness…………I could eat anything to - I’m now allergic to many foods - In my personal opinion it’s due to some sort “medical” intervention that many of us are unwell….. good luck everyone
all prescription drugs have serious side effects……! Always read these on the information leaflets…….no one in a white coat has cured anyone on here……use your own common sense……your decision…..
I don’t think if you have negative test results it doesn’t mean you don’t have autoimmune disease there is so many different ones and medication that can alter your results as well. But it doesn’t hurt to look into it because meds all have different effects short long and everyone is different I wish you luck I’m still trying to get my blood test to show what my underlying condition is Ana are positive have every symptom and new ones yearly. Fingers crossed for better testing and treatment
I realise this post is old now and read your update. But, due to new replies, it came up in my feed. So wanted to say that I too was intrigued by this suggestion. The weakness in my own arms and legs would have started at same time I started taking PPI due to steroids and immune-suppressants, 13 years ago when I was misdiagnosed with RA. I too have MCAS secondary to hEDS but have had to opt for many powerful drugs over the years due to progressive and progressing autoimmune diseases, Systemic Sclerosis and Sjogren’s. The former was finally diagnosed conclusively last year, the latter is seronegative and was diagnosed by lip biopsy in 2016.
My diagnoses and treatment journey has taken 12 years to a lifetime and I’m coming up for 62. I did learn a lot from an eminent Scleroderma professor last year about my rare antibody and he made links to likely chemical triggers he’s identified, anecdotally. This seems apt given that no one else in my immediate family has so far been diagnosed with any of these nor terribly symptomatic. Although my mum had an allergy to bee stings and my sister is allergic to penicillin. My rheumatologist (it took 7!) and I have posthumously diagnosed my mum with Lupus and my maternal Grandma had some form of Vasculitis.
Chemical sensitivity has badly afflicted me since I was tiny so it all makes sense that PPIs may have triggered Myositis-like symptoms, which arrived with my Raynaud’s. Having said this, when I’ve been off all (other than levothyroxine) meds for a year or two I was much sicker than I am since taking Esomeprazole, Famotidine and Mycophenolate. But nevertheless I do think there could well be a connection between PPIs and muscle weakness, neuropathy, Raynauds etc.
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