I've been on Omeprazole for over 10 years and quit cold turkey

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I've been so sick for a month now.  I've been on Prilosec "Omeprazole " for over 10 years.  I was taking it originally for acid reflux.  It worked so I never thought anything about it and added it to my morning vitamin regimen.  20mg once a day in the morning. 

About a month ago I felt a pain in my lower left abdominal area.  I freaked out and thought I had cancer or something, so I got the bright idea of quitting my Prilosec.  "It ended up being a pulled upper groin muscle during golf."  Well that's when my personal hell began.  I didn't notice anything the first couple of days.  Within 5 days I started feeling sick, nausea, bloating, constipation and stomach pains all over, totally fatigued, no strength left.  I couldn't eat at all no appetite.  Total anxiety along with other strange pains in my body, legs shoulders, arms and butt area.  I truly feel like I'm dying.  I was ready to kill myself, that's how bad I feel.   I didn't put 2 and 2 together until my 2nd week of this horrible experience.  I'm laying in bed thinking what did I do different and it dawned on me.  So I jump up and Google quitting Prilosec cold turkey and then I knew I screwed up.  I immediately take 2 Prilosec pills.  I started back on them daily.  I've gone to the ER twice.  Every time I eat something halfway solid I get sick about an hour or 2 later.  My doctor really isn't any help, she was uniformed about quitting it like that.  She told me to continue taking the Prilosec and she prescribed Sucralfate, every 4 hours.  It's a acid neutralizer and coats your stomach and if you have ulcers it helps protect them from getting worse and heal.  I'm scheduled to have a endoscopy tomorrow morning.  "Nervous"  I think I damaged my whole digestive tract with too much acid for those 2 weeks.  I'm still sick as a dog and can barely get out of bed.  I didn't have any of these symptoms until I quit the Prilosec.  I've been back on the Prilosec for almost 2 weeks and the Sucralfate for almost a week.  Is there any hope of recovery?  Has anyone else experienced anything similar to this?  Thanks in advance for any replies.  CJ

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  • Edited

    Hi CJ I stumbled across this forum and I see you are one of the latest contributors.

    I just wanted to let you know what I have discovered with my mother and I hope it helps yourself and others.

    My mum has been on 20 mg Omeprazole for 30, maybe 35 years (prescribed for a Hiatal hernia for life) and of course we discovered too late that it was stopping her B12 absorption so she has severe nerve damage and pain and in her legs.

    Along with malabsorption of B12, she became Anemic with suppressed iron and then of course it suppressed her magnesium and calcium.

    She has spent the last 5 years getting blood and iron transfusions and last year was a disaster.

    She landed in hospital Hb 47 and they could find nothing that was causing the bleed but put her on 80 mg of Omeprazole and said blood transfusions for life.

    I have tried many times in the last few years to get her off Omeprazole and have tried all the things that everyone here has used and more.

    This time tho when she came home from hospital I tried something else and we have never looked back.

    VITAMIN K2-MK7. I had done a lot of reading about this vitamin and had been taking it myself, not for heartburn or indigestion as I don't have this but for my general good health and bones etc.

    I was interested in in its ability to make sure your calcium gets to your bones and teeth and not ones arteries and had read that Vit D3, important as it is, is useless without Vit K2.

    I gave some to a friend of mine who I didnt know had heartburn and indigestion etc and they reported to me that it was amazing for them.

    So I then thought I would try my mum on VIT K2-MK7 and amazingly she told me it took her heartburn away so I started taking her off Omeprazole and altho that was a terrible roller coaster of withdrawals since she had been on it so long, her body had to find a new normal.

    It really was and awful year last year for her but the VIT K2-MK7 at least took her heartburn and indigestion away so for the first time in her life she didn't have that to contend with.

    I use Clinicians (NZ company) VIT K2-MK7 with D3 under the tongue 90 mcg of Vit K2.

    Twice a day. Once after breakfast in the morning and once after dinner at night.

    She still has her coffee in the morning with fresh cream!

    Im not a Doctor (Im just like yourselves, searching for a better path than Omeprazole) so please do your own research of Vit K2-MK7 in case it clashes with other meds that you might be on, like blood thinners for example.

    If you've lost faith in your Doctor, maybe try your Pharmacist. I find mine amazing.

    Try it. It is the miracle that we have all been looking for.

    I think I have been googling for the last five years of my life trying to find something that would give my mum a better life with less side effects and pain.

    Ive tried absolutely EVERYTHING and I think everyone else here has too and this is what we have all been looking for so we can get off the dreadful bloody Omeprazole! But be warned come off Omeprazole slowly as we didn't and the withdrawals as I said were dreadful.

    Try it and change your life for 2021...god knows we could all do with a better year!

    Research it and find out all the amazing things it is good for.

    Its the Vit K family but its NOT Vit K1...thats different.

    Kindest regards and good health for2021

    • Edited

      I read your article above and am very interested. I've been on omeprazole for over 10 years and only recently noticed I have high uric acid in my kidneys and my liver was a tiny bit off along with slight swelling in my left ankle. I am very concerned that this could be for using omeprazole for such a long time. I have extreme GERD to the point when I tried getting off the omeprazole I felt as though I was having a heart attack, terrible chest pains, jaw pains and a horrific headache, this lasted for about 15 minutes. It's happened several time over the passed 10 years when I get off the omeprazole but I so worried about my organs. I have been taking vitamin D3-K2 and did take it when I took myself cold turkey off of the omeprazole but if I remember correctly, I had one of these attacks. What I am wondering, is the K2-MK7 much different from the D3-K2? I want desperately to get off the omeprazole as with getting older, I don't want to go in to kidney or liver failure. I have read articles where when people do get these attacks and they go to the ER thinking its a heart attack, doctors think it is and first check for that not thinking it could be a very very severe GERD attack. I know when I spoke to my doctor about it, he thought I was crazy but it's very real and extremely painful and scary. I know it was a GERD attack as I did get checked as it happened and afterwards I have terrible gas where I belch. I have asked many people I know that have acid reflux if they have had this and they say no. I have GERD, hiatal hernia, gastritis and now over the passed two years, I have developed colitis so my digestive system is a mess. I would love any incite on this and if you think the D3-K2 is similar or totally different than the K2-MK7. If you feel it's different and helps with digestive issues and GERD and is more appropriate for this problem, I will definitely try it. I look forward to your reply. Thank you. Diane Richards

  • Edited

    hi,

    id like to share my experience as i was prescribed omeprazole and was on it for ten years. first thing i want to say is lifestyle habits have a huge impact. i was first prescribed omeprazole 40mg to treat gastritis which was horrible. doctor did not tell me to be on PPI short term and told me to keep taking it which ended up being a long 10 years! i didnt really watch my diet throughout those 10 years, but i was always active and thin. i drank coffee and soda a lot. one day i was like i dont want to take

    this anymore after being on it for 10 years because i felt i didnt need it anymore. BAD idea. i started getting the worst rebound reflux. i mean terrible. i even developed LPR. i could not bend over , eat, or drink water without getting the reflux. then a doctor told me you have to gradually reduce. you can not stop PPIs cold turkey after being on them for awhile or you will feel terrible. so i instantly went back on them for awhile until i could get the reflux under control. i did make an effort to change lifestyle habits, yes you do have to put work and effort into feeling better. i cut out irritating foods, coffee, soda, greasy food. then when i felt better i GRADUALLY decreased from being on 40mg . i did this taper for about 1 or more years and now i am PPi free with no issues. yes it was a very very slow taper. you will feel better again if you are willing to make some changes and be patient. it is often not a quick process but every day i felt closer to the finish line. the biggest thing with feeling better is going to be what you put in your body. i loved drinking my coffee but was not worth the discomfort for me.

    hope this helps! there is a light at the end

  • Posted

    I'm having some of the same symptoms, mainly feeling tired all of the time, upset stomach etc..... I was on Omeperzol for many years and Ive been off now for about two months but im still having these issues

  • Edited

    i came off Esomeprozole 40mg cold turkey I have got the excess acid again but whats bothering me most at this time is the stomach pain that arrived after about 2 to 3 weeks i have been told that it could be withdrawal symptoms has anyone else been like this and what did they do , I have now been off the tablets 4 weeks and dont want to start back on these awful things but does anyone have an idea how long the symptoms carry on

  • Edited

    I have been on Omeprazole 40mg for over 5yrs. I'm 54yrs old. stepped down to 20mg per day for the last year. i recently tried to quit it cold turkey but had bad acid reflux. i am know changing my eating habits and trying 20mg every other day.

    I only tried to quit because a relative informed me of some of the horrible side effects. This is not a drug you should be taken on a permanent basis. I started to have neck pain and headaches.

    Doctor sent me for an MRI of the head and neck. Tests found Cervical Spinal Stenosis and Trace Chronic Microvascular Ischemic changes in the white matter, which can lead to early dementia. it has been noted that Omeprazole can cause Spinal stenosis and dementia. The report is titled "Coming Off a Proton Pump Inhibitor" By David Rakel MD.

    i am currently trying to change my lifestyle to include healthy eating and exercise. i am only rating foods that help with acid reflux/GERD until it goes away. I'm one week in on the lifestyle change with 20mg every other day. it is somewhat uncomfortable at times so i will take a few chewable antacids. I have had issues with anxiety but i believe that is separate from this issue. I know that there is no shortcut and should've just eaten right in the first place but i just wish my doctor would have pressed me to only be on Omeperazole periodically and not long term.

    i will post in another week on the progress.

    • Posted

      Hello, thanks so much for sharing - I'd be really keen to know how you get on. I've been on these meds for 27 years and super keen to get off them. I'm a couple of days cold turkey but may have to move to a lower dose and taper more.

      I've written a longer answer on this thread on my experiences in case helpful! Good luck!

  • Edited

    I was sick for 24-48 hrs with what i thought was gallbladder symptoms or virus. I was left with burning pain in chest that kept me up at night for months. I was put on omeprazole 20mg evenining and pepcid 20mg morning. After NEGATIVE endoscopy and still no relief the GI doctor diagnosed me with GERD & increased Omeprozole to 40mg and pepcid to 40mg. Still w/ no relief doctor increased omeprazole to 80mg (40mg twice a day). I actually felt sicker. The GI doctor did not want to budge from GERD diagnosis. (I never had GI issues prior to this.)

    I was getting less than 3-4 hours sleep and could only sleep on my stomach (not typical of GERD) . After a year, I finally got a full nights sleep with 300mg neurotin at bedtime. I stopped the omeprazole, but cold turkey proved to be very difficult. The the acid rebound continued ~3 weeks and made me feel like I was drowning in my own secretions! It was rough, as I resorted to sucking on hard candies to keep swallowing. However, 2 days after stopping it, the daily pain I had mid clavicles went away. I eventually got to the other side. I'm 50% better, but still not feeling well. Exercise helps, dint let anyone tell you its because "its a distraction"! I've ALWAYS believed that people know their own body's. When someone's in pain, it distracts them from everyday life! I think the omeprazole made me sicker. The rebound when you stop it is awful, which leaves me to 3 questions.

    Is this the best or most affordable drug in the toolbox?

    How could doctors not know about the rebound affects when stopping the drug , when it is prescribed for millions of patients ? ( most are left on it way longer than it was approved for use.)

    Is the reason for not stopping omeprazole because doctors DO know the rebound is awful ??

    Lastly, the anxiety comes from not feeling yourself and not feeling well day after day!

    • Posted

      totally agree with you on how awful withdrawal is - Dr's ought to warn patients in my view!

      it's definitely anxiety inducing to have rebound - agree!

      Best of luck with your recovery

  • Posted

    Hey CJ and all,

    Trying to get off PPI’s is a topic I’m really focused on right now. I’ve been using them for close to 27 years and I just know instinctively that I need to get off these drugs. I’m having a go right now and it’s not fun at all. I’ve done it before and was really hyper acidic but I persisted by reading about other people’s journeys. Below is what helped me last time and further below is what I’m working on this time round. Before I list these I would say that doctors have always told me (in the U.K.) that there is no evidence of issues with long term use, if my dosage isn’t working just increase it, it’s best to be on it to avoid Barrett’s Osophegus and etc. I started on these meds young and trusted blindly but I’ve got serious doubts now having read lots of articles on the issues with long term use. I think these meds are widely prescribed but when first produced were not intended for use beyond 14 days. Please if anyone reads this don’t be put off this drug from what I’m saying, it may be that my doctors were right - but I just feel worried that I’ve suppressed acid for so long and as a result believe I’ve not absorbed vitamins and minerals properly caused lots of other issues.

    So here is my list from my last attempt to stop PPI’s:

    • I used Gaviscon Advance as often as needed.
    • I had Rennie tablets with me all the time to ease hyper acidity.
    • I could only sleep on my left side as it angles the stomach a certain way at night so as to reduce acid release at night.
    • I read about the Pivot protocol (wasn’t sure about this but some things made sense)
    • I bought the Acid Watchers book and tried to follow this.
    • serious triggers for me were chocolate, soda (fizzy drinks), bacon and citrus fruits.
    • I tried Aloe Vera juice which may have taken the edge off.
    • oddly I also found buscopan can take the edge off osophegal spasms.

    My hyper acidity was off the charts for weeks so I used all of the above for relief, night time seemed worse because I think the muscle at the top of the stomach is more relaxed then.

    This time round:

    I’ve been off omeprazole for 2 days and it’s getting rough. So I’m adding the following to the above:

    • I bought some DGL tablets - it’s like a liquorice extract that I take with each meal.
    • I’ve read about Zinc Carnosine and plan to try it.
    • I’ve also read about wheatgrass juice powder and will hopefully use that too.
    • I need to cut sugar out because it seems to cripple my acidity.
    • I’ll take care of my mental health using stress reducing techniques - suppressed anger etc seems to trigger acidity for me. I work in a super stressful job.
    • I’ll be careful with carbs because protein seems to be less triggering for me.

    Just a few things I’m trying! Hang in there whatever you decide to do, I literally feel your pain!

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