Does anyone have any experience/information on ME/CFS symptoms worsening while taking Omeprazole?

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Hi, am new to group. Have had ME/CFS 30 years with usual symptoms coming and going over the years, however since taking Omeprazole for 19 months my symptoms have returned quite badly and am having to give up work. Can anyone help with information please?

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14 Replies

  • Posted

    I have read that Omeprazole can have side effects like sleeplessness and dizziness that are common symptoms of CFS, but I'd be surprised if it were the cause of your ME/CFS symptoms getting worse. I also know that Omerpazole is being used by some patients with ME/CFS without any problems.

    Are you aware that both ME/CFS and reflux disease are stress-reactive illnesses? If you started taking Omeprazole because your reflux symptoms got worse, also your ME/CFS symptoms are likely to have started to get worse gradually.

    Before you give up work, have you tried any medication to CFS? Have you tried low-dose naltrexone? Have you tried D-ribose (at least 10-15 g per day)? I have just recently found D-ribose and I'm finding it extremely helpful. For LDN, see another recent discussion trail on ME/CFS.

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  • Posted

    It might be worth asking your GP for a vitamin B12 test. I once read that long term use of Omeprazole (I'm also on it) can affect levels of B12.
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  • Posted

    ive read somewhere that PPIs strongly eat up coenzyme 10 levels and you are supposed to supplement more with this when you take them...however I take lansaprazole and coenzyme 10 and still feel rough!!

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  • Posted

    Thanks all for your input. I am taking coenzyme Q10, Vit B12, magnesium and D-Ribose. My acupuncturist has suggested low dose naltrexone, so I'll follow that up.

    Thanks again for your replies, very helpful.

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  • Posted

    Jacquie and Sueliz: I wrote about low dose naltrexone in a discussion topic "CAN SOMEONE HELP AT ALL? CHRONIC FATIGUE SYNDOME / CFS" See my comments to that discussion to learn more about LDN.

    First I wasn't sure wether LDN was helping me, but gradually I realized that if I forgot to take the dose or tried to be without it, my sore throat returned the same day, and eventually fever came back, too. For some people it has given an even more dramatic relief. LDN is becoming the standard treatment for CFS in Finland.

    In addition to LDN, I'm currently taking also D-ribose 10-15 g/day. A lower dose did not have the effects I was expecting, so for a long time I thought it was useless. Now it's the best medication I can think of to prevent fatigue.

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  • Posted

    I missed that about LDN - sorry :o(

    I am already taking D-Ribose also, been on it for months, but only take 2 spoonfuls a day...should I be upping this? As i dont feel it has worked - did you just do this yourself or consult a specialist to do this?

    Im am also on Amitriptyline - just moved over to notriptyline as less side effects

    I am going to check out this LDN - Did your GP put you on it?

    Thanks for all the info on this :O)

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  • Posted

    I hope you'll find LDN helpful. Just be sure you start with a low enough dose.

    What kind of D-ribose product are you using? Please take a look at the jar to see how much of D-ribose 2 spoonfuls contain. I'm not sure, but I have a hunch that D-ribose is more helpful in milder forms of CFS, whereas LDN can make a big difference if you are more seriously ill...

    I first read about D-ribose on a (non-English) patient forum and started taking 3-5 capsules per day - didn't really make a difference. Then about half a year later I checked out a YouTube video (a set of slides really) where an American doctor talks about medication for CFS, mostly concentrating on D-ribose. I've been using the product for about a month now. It still works, though I don't think it will cure me completely.

    For LDN I went to see a CFS specialist who I knew would prescribe it. A lot of GPs don't know a thing about this illness, not to talk about medication... Good luck!

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  • Posted

    Thanks Avacado - im on list to see CFS specialist, so will talk to them about it

    Yeah i read about it in From fatigued to fantastic and started using it from there...on my jar it says DN Deluxe Nutrition...it was fairly expensive and it says 1 scoop is 5g and to take 3 scoops a day...I have only ever done 2, mainly because I forget about it, then get too late in evening for dose 3...

    Im currently seeing homeopath / acupuncturist and physio - she has been great and It was her that gave me the CFS /M.E diagnosis, doc thought fibro but the physio said i dont have enough muscle spasm like her other patients with fibro, mine seems to be more about fatigue and viral than anything - i trust her more than any gp i have seen

    Was your CFS specialist on NHS? Or was it private? Im worried now that an NHS one won't think about prescribing it...perhaps if i print info off on it then they will see

    Im on a whole host of other vitamins and supplements as well as notriptyline and also some sleep meds when needed.

    My illness is about 15 months in

    Thanks for all info and sorry for hijaking this post :O)

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  • Posted

    I heard about low dose naltrexone from an American friend with CFS. She swears by it. I asked my GP if he would prescribe it but he wouldn't. He'd never heard of it prescribed as a low dose only as Naltrexone in full strength for drug addiction.

    That said, you can apparently get LDN prescribed by a private doctor via a phone consultation and there is a chemist in Scotland who will then dispense it by post. I haven't done this yet but am looking into it.

    If you google LDN and UK there is a charity in Norfolk with a very informative website. They are currently campaigning for LDN to be recognised and available through the NHS

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  • Posted

    I don't live in the UK so I don't the situation there so well.. But if you google Dickson chemist LDN, you'll find a fact sheet that provides all the info you need to get started. LDN is a very safe drug and well tolaterated even by CFS patients who, like myself, can be supersensitive to lots of medication, even vitamins. That's partly because the dose really is (at least at start) about one fiftieth of the original naltrexone.

    It's great that you have found a physio knowledgeable enough to have diagnosed you. It's so encouraging to find someone who cares... But like Granny said, medication you can get even by phone consulation...

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  • Posted

    Thanks for your responses

    Avacado - whereabouts are you - assumed you were UK sorry

    Granny - can you let me know how expensive it it to get it through this private doctor

    Many thanks

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  • Posted

    I don't know how much the initial Doctor's consultation is but the LDN works out at about £18 -£30 per month according to the LDN research Trust. Will email you a link to the relevant page.
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  • Posted

    Omeprazole can cause malabsorption of vit B . My mother has been taking it long term and has to have vit B12 injections and daily folic acid. M.E. / CFS is  not helped if you are not absorbing vitamin B. Google omeprazole and malabsorption of vit b. Lack of vit b causes fatigue ...
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