Trying to get OFF Prilosec / Omeprazole been on it 30 years
Short version of a long story. I'm male 71. My Gerd/Reflux started 30 years ago & I was given Prilosec 20mg daily & it worked. I've had EVERY issue I am NOW reading about as side effects & that it was only intended for 14 days ? I've been to Gastros & had colonoscopies & indoscopies as recent as June 2023 & numerous negative stool cultures & ASK for HELP from NUMEROUS Drs over the years to NO avail. I've been hospitalized several times with my diarrhea & low magnesium & NOW to ME it ALL is starting to make SENSE. My biggest concern is I'm muscle wasting & have had testing done & told NO muscle disease. ALL sorts of labs & blood work. CT & MRIs. I'm really getting a lot of loose skin ALL over. I'm weak 40 lbs feel like lifting 100lbs. Aches & pains pretty much everywhere. Hips & knees & shoulders. Have xrayed everything & all I get is you have Osteoarthritis. Offer up MORE pills. I feel like NO one will address it I think since they have continued prescibing it so long & NOW there is so much BAD about it that they are AFRAID to say anything ? My kidney labs are always out of range, borderline anemic & other labs are out of range & when you READ about what they CAN mean a lot lead back to cancer. It's SCARY to THINK this may be related to talking this medication but when I question several years of labs out of range I'm told its OK & expected for my AGE ? Spinal surgeon & Rheumatologist both said Spinal Stenosis in his opinion was causing it & surgery could supposedly stop or slow it but a 6 hr surgery & 3 month recovery sounds scary. ANYONE going through anything like this ? Occular migraines are more & more frequent too does any of THIS sound FAMILIAR to anyone on Omeprazole 20mg. long term? It works but if the drug ruins your quality of life why take it. I tried once to get OFF this & the rebound was awful. I've rotated every other day with Famotidine 20 mg but it falls shot by mid day the next day. Thinking about trying morning & night ? Drs really NO help. I see a lot of lawyers taking cases ? I just want my life BACK & a REAL fix.
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I am so disheartened to read all the comments here. I too was on a PPI and was told "we don't worry about it until you've been on it for a year." I told myself I'd try it for 6 months. At 6 months I felt a bit better but I had no idea what it was doing to my insides and I told that to my doctor. She immediately got on the phone with the GI department and I was scheduled for an endoscopy (my 3rd) in 2 days. The GI told me to never take a PPI again, that. my cells were hypertrophic. So....where did that leave me? I said to myself. So on my own, after reading some articles, I went gluten free, sugar free and dairy free and after 2 weeks I felt a lot better and I was on to something but what? I decided then it was time for aa change in doctors and switched to functional medicine after reading about a man named Chris Kresser who had had a 10 year battle trying to find an answer and he did it on his own, became a functional medicine specialist and opened up the CCFM - California Center for Functional Medicine. I researched functional medicine and realized I would find an answer to my issues and found one near me. She tested me thoroughly for a CAUSE of my symptoms ( doctors we've all been to treat the symptoms, not the cause!!!). I was found to have SIBO (small intestinal bacterial infection), a fungus, a parasite and a yeast infection! WOW was my reaction - foods I was eating, traveling, stress were all contributing causes. She prescribed a number supplements, her nutritionist helped me with foods to omit (not forever but for a period of time) until we could build up the permeability of my digestive tract - or leaky gut. Once your gut has its permeability destroyed, all kinds of toxins and infections can set in. If you are interested in finding a functional medicine doctor, go to the website ifm.org (institute of functional medicine). You can find one by city and state and look for one who specializes in digestive disorders. It worked for me.
I wish all the very best in finding answers and relief - you all deserve it. Don't give up! Find someone who knows how to help you specifically with the symptoms you have to test for the root CAUSE(S). TAKE CARE!
I took Prilosec for years.
Reading all the press about Prilosec, as well as it didn't seem to be helpful anymore, I have avoided my largest trigger of anything made with a tomato base.
If i do have chocolate close to bed, that also triggers it.
If needed, I take 2 Famitodine and it does help.
I am sorry you are going through all this. I was on omeprazole for four years and it screwed up my digestive system, kidneys and bones (osteoporosis, which of course is attributed to my age). I don't have the other issues you do. But if you don't have enough stomach acid to digest your food, you aren't getting optimal nutrition. To me, that affects the whole body, organs and bones. So old age or PPI for your conditions? I couldn't say, but I would wonder. At this point though it doesn't matter. You have issues.
I weaned off the omeprazole over two months, reducing dosage. then I subbed famotidine for a few weeks, and cutting those pills up to complete the weaning process. A pharmacist said I could cut those pills, so I took them daily but decreasing the dosage very slowly.
Also went on a whole food, low-acid diet. Am doing better but it takes time (though fortunately my kidney values rebounding from CKD stage 3 to just over into the reference range. Don't know if that's possible after 30 years on that drug). There are two ENTs who have put out diet books/advice on how to manage GERD through diet and lifestyle changes. One is Dr. Aviv, and there is a FB group that offers a ton of recipes to supplement recipes in his book: https://www.facebook.com/groups/199013402360712. Koufman has a website that has a lot of free information about gerd and silent reflux (which affects the throat, nose, ears, which is why you have two ENTs talking about acid reflux): https://jamiekoufman.com.
When I stopped completely my reflux rebound lasted about three weeks. My perspective was that if I couldn't completely get off drugs I would switch to famotidine, which as an h2 blocker doesn't suppress acid nearly as much as the PPIs do. For me, if I follow the diet strictly and lifestyle changes such as sleeping with head propped up, giving myself a lot of time between eating and exercise, things like that, I do okay. Admittedly I don't follow the rules all the time, and then trouble erupts. I am still doing better than I was before starting omeprazole as far as reflux attacks go. My digestive issues such as horrible gas buildup causing abdominal pain has subsided. It is tough getting off a PPI after years of taking one (my doctor had told me I needed to take it daily for the rest of my life or else get cancer). I have no idea if you have esophagitis or Barrett's or anything else that would make taking a PPI more pressing. Whatever course you take, I wish you well.
I let acid reflux go untreated for about 20 years — just ate lots of Tums — and ended up being diagnosed with Barrett’s esophagus at age 45. I’ve been on Prevacid for over 25 years. If I miss one dose, the pain from the acid reflux is excruciating. So I have no desire to stop taking it. Fortunately I haven’t had the bad side effects that y’all have experienced — I’m so sorry for all of you who are dealing with those issues.
And by the way, my gastroenterologist explained to me years ago that although prevacid wasn’t intended for long term use, I would have to be on it for the rest of my life.
@pdilly you can still transition very slowly to a short acting med like Pepcid or Zantac. I understand you don't want to, but for the sake of others in the same boat, it is possible. I have osteoporosis so doing short acting vs Prilosec or Prevacid was important for my health.
I've been on a PPI for 6 years. I went off of it and developed peptic ulcers so my GI said PPI'S for life. My last EGD showed No Barrett's Esophagus or ulcers! That makes it worthwhile for me to continue on them for life. I'm turning 69 so I'm almost at the end stage of life for a male.
Thank you but that wouldn’t work for me. My doc had me on those when he first started treating me and they didn’t give me any relief. Prevacid did. I take 30mg of prevacid in the morning and the same at night. My quality of life depends on it. Acid reflux and the throwing up that accompanies it is horrible. But I wish the best to all who are trying to wean off a PPI. I hope you are all successful!
I’m so glad you have no signs of Barrett’s esophagus or ulcers now. That makes life so much more livable!
I've trying to slowly wean off pantoprazole. I've take it for 2.5 years, one year at 40mg then 20mg after that. Every few days, I substitute Pepcid 20mg twice a day instead. I've tried this before and wasn't successful. But like you, I have osteoporosis so really want to get off it. How did you transition and do you take only Pepcid now?
Went & saw my Gastro yesterday & was interviewed & questioned by an intern that was trying to play the part until I said so YOU are going to REPEAT what I tell YOU to HER ? Then my Gastro comes in not friendly because I have NOW included her & my primary & another Gastro that's more into the Live in a medical 3 way text so to speak with the guise of gett you ALL on the SAME page. She played all the Prilosec / Omeprazole down saying your endoscopy & Colonoscopy were fine & just because you're borderline anemic & magnesium has gone too low before kidneys & creatinine are ALL out of norm & have been last 5 years NO worries for your age. Take Imodium every other day. Eat fiber take metamucil bla bla. OR you can take 40mg Famotidine 2X a day. The ONLY difference I SEE if it would control the heartburn is its less aggressive to the kidneys but pretty much ALL the same side effects. Had some sort of Sono this morn on stomach. I feel CERTAIN my GI issues are from the meds