need advice on coming off ppi's

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marigoldgirl81

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So, i have been trying to come off ppi's....for some time now, seriously since october 2009. I have all kinRAB of problems on them, getting off them is proving to be difficult, so wondering how others cut down. I already have severe GI problems (i suspect from ppi's, much of it started after i was on prilosec 40 mg last late summer and has been relentless, everyday) so, i have to be careful but have tried most of the meRAB and have decided i want off. A naturopathic dr is helping to guide me but they feel i should wait till they get my body in better shape and then i won't even feel coming off the last 20 mg (i just weaned off 20 mg a month ago). I see good reason in their idea, but part of the reason i have become so underweight and having trouble absorbing nutrients, etc is from prilosec, so i wonder if i can get better UNTIL i wean off the last pill?

Idk, thought i've been struggling with all month. Has anyone else come off of prilosec (2- 20 mg pills a day) and how did you do it? Over a month? I am trying to figure out how to get off this last pill when it is time. I know you can't cut these, so every other day?
 
I cut down my Aciphex pill in half and went from 20 mg to 10 mg. After being on the 10 mg for a while, I began to cut that 10 mg in half to 5 mg. At that point, the Aciphex started to not work. Therefore, I discontinued it and began to take Zantac 150 twice per day, which I am still doing along with supplements, no coffee, no alcohol and no spicy fooRAB. Of all the remedies I have tried, I like DGL and coconut juice. Both are soothing to my stomach. I don't think I'll ever be able to be off some type of acid suppressor, so for now I am resigning myself to the Zantac in the hopes I may be able to cut down from 150 mg to 75 mg twice a day and so on.

I do think we develop some dependence on the PPI's. When I started to come off the Aciphex, I experienced symptoms I never had before I took a PPI.

Good luck and continue to do it gradually. I think Neddy has also posted about how he recently got himself off his PPI's.

Hope others chime in.

Rose
 
Yeah, like i said, i am shocked to find someone with such longstanding esophagitis...people have no idea, i listened to my drs every move in the beginning, prilosec, protonix and nexium, carafate, but they either didn't work or side effects were unbearable. My GI dr is completely perplexed by my case, i can tell. Yes, i am very glad i am off those meRAB, i truly think they helped trigger the esophaitis and being on prilosec. I recently made the decision to drop one of my 20 mg prilosec pills ( i was on otc 20 mg 2 x a day)...can't say it was wise but it was before the naturopath dr and i knew i had to somehow start a journey off these. I wouldn't call it wise with the shape my esophagus is in, no definitely not wise but thats what i chose when stuck between a rock and a hard place. Trapped is how i kinda feel right now. I notice my food digests a bit easier, and it doesn't regurgiate as much as i used to. I am still refluxing and now have a huge increase in stomach burning, ibs and odd back pains, tenderness, so yeah. The ND is telling me he will get me to the point where i won't even feel i am coming off of it, haha!!!! I am trying to be positive but i am not sure if he knows the depths of hell my GI system has known for nearly a year EVERYDAY now. But he said he has treated other cases like mine. Also my husbanRAB cousin is a ND that specializes in adjunct cancer therapy but she has spoken to me a few times and said her profession is seeing GI problems like my on a consistent basis, that ppis are making some people much worse and when the drs run out of ideas, they come her way (like you and i).

Gosh, do i know that somethings got to give, its like we're staying on the ppi's so our throats don't erode away, yet the ppis are making things worse (well, i think for me at least, not sure about your case). I have thought more than once about the irony of my situation. I did acupuncture and chinese herbs for 4 months but not with alot of change, so i stopped. The ND said i need more focus on diet first and something milder than chinese medicine like homeopathy. He also does chinese medicine but said it is too strong for my stomach. I know they are getting ready to try me on a omega homeopathy med. . Idk, with the shape your stomach is in, my advice is to be very careful of supplements right now. At least thats what i've learned. SounRAB like you know an ND that is going to help you. Did they do a fingernail analysis? or tongue? etc? My findings were interesting to listen to. He even saw an old adage sp? (scar) on my brain from a 10 year old minor concussion! Just by looking in my eyes with his scope or what have you.
Even if i was allowed to eat more fooRAB, my situation is so bad that i can't my stomach burns on so many right now, it is nutty how bad things have gotten. I truly pray for better days. Have you looked into an alkaline diet? They want me on a 80-90 % alkaline diet. Then i do some jade machine which is supposed to be healing my insides and regenerating new cells, idk, i'm skeptical of everything right now....it does feel soothing for a bit afterwarRAB and wierd things will happen while they are clearing my lymphnodes....but its my life and i have to find a cure. It is very expensive and since i can't work, ha! But a credit card it is and he told me hes so sure that i will get better that he signed something that if i'm not better i will get my moey back.....so, that helped my decision.

I was doing ensures per my western med dr for awhile now but found those are extremely acidic, so am searching for a alternative. I do alomond milk with some nutritional powder they have given me, but there isn't much fat or protein in it. He told me i need to wait for that? Also, my new diet for over a month, you are going to laugh...no dairy, wheat (grains at all for the first week!), nuts or meat (until recently). And all pureed...gotta do what you gotta do, right? best wishes, keep me updated.
 
From my experience I've learned acid reflux is caused possibly by a corabination of things like candida,pancreas insuffiency(not producing enough digestive enzymes), irabalanced intestinal flora & nutritional deficiencies such an histidine (an amino acid), zinc, and vitamin B1 (thiamine), all of which are needed for HCL production. PPI only make things worse. First they stop you from absorbing certain vitamins. Then the stop whatever acid production you have which protects the stomach from all kind germs,parasites,etc. HCL disinfect and kill off bacterial and parasites in your food. I've learned 90% of people who are using PPI actually have low stomach acid not high stomach acid. Doctors rarely ever test you to see if you have low or high stomach acid they just quickly write a script for PPI & thats what we call a quack.
Some things that can help to eventually get rid of the so called acid reflux/gerd is to go on a alkaline diet to help get the candida under control. Also take a couple of digestive enzyme with each meal & a probiotic on a empty stomach. Also take a Betaine HCL after you finished your meal or in the middle of the meal.
 
I really feel for you. We have some similarities. I started a new thread today with some of my experiences so far, and just saw your thread. I am only at week 2 off of Prilosec, but also have intense stomach pains, constant burning in esophagus and throat, the constant refluxing, etc., etc. I can't keep much food down and have also lost weight (and still losing). My height and weight are slightly below yours.

Since I'm new to this experience I don't have any advice, but I hope to see improvements for you.
 
Hi Marigold:

What I am finding out for me through trial and error is that keeping carbohydrates on the low side helps for me. I also read somewhere that calcium can act as a natural antiacid and to take one's calcium supplements in liquid form (powder diluted in water). I am now doing that. I bought a liquid calcium citrate/magnesium/vitamin D3 supplement I can take twice a day and get my daily allowance of these minerals. I figured there is no harm in trying the supplements in liquid form if doing so can also help reflux symptoms.

I am also drinking apple cider vinegar (two tablespoons diluted in a glass of water) three times a day. I actually think it is helping me, though yesterday was somewhat of a rough day. I am now completely off Zantac and will only take it if I have a particularly bad flareup.

I have given up on dairy and coffee and now drink almond milk. I am also not eating a lot of fruit. I can eat watermelon, cantaloupe, and berries. I cannot eat grapes or bananas. I am eating more protein and veggies and not a lot of potatoes or carbs for now.

It seems I can now have three or four decent days and one bad day. I figure if I need to take a Zantac on those days as needed that is better than taking them every day round the clock.

Anyway, this has been a long, long struggle for me since January, but I feel I am beginning to get some control and insight over this disorder. I honestly can say that rebound for me has taken approximately three months and I may still be experiencing it. I am not sure. But coming off PPI's is not at all easy.

Thank you for posting your experiences. It helps me to read what others are doing and what seems to be working for them.
Rose
 
Have any of you read Dr. Jordan Rubin's book, The Maker's Diet? In it, he chronicles his journey with Chronhs' disease and how he overcame it. I find his supplements a bit pricey, but they have a very loyal following. If anything, his book is inspiring and a very good read. There are recipes as well as guidelines in it too.
another
'Rose'
 
you as well, this is just awful, like a nightmare of sorts....b/c for me, since ppi's made me sicker, i have to be my own detective (like many here)....and its just a predicament i never saw myself in, 104 lbs, 5'5 and a fire red throat for nearly a year now. Yes, i've been to drs not for over a month b/c i am sick of them and they are sick of me saying the med is making me sicker. I pray this hasn't turned to cancer yet, my stomach biopsy last summer was negative (right when everything began overnight) and my cbc this jan was ok. But i feel like i'm dying, exhausted, dizzy, the list goes on.....but truck on we will, we will get better. My husband looked at me tonight when i was getting ready for my shower with the most shocked eyes and it made me cry, i look anorexic and i'm not!! I want to eat everything!! When i do eat, i just can't gain weight anymore.

If i were a dr, i feel like i would say, "hey, now you've developed all kinRAB of new things, especially after we upped your dose of prilosec, maybe you are having a reaction to prilosec?"....but no, totally stuck between a rock and a hard place. Somedays i feel like i know what i'm doing and some days i look in the mirror and freak out and wonder what the hell has happened in a one year time span..
 
Yes, what a nightmare!! It's hard to believe what has happened. It will definitely require a lot of time and patience.

I hope you can start gaining weight back. Has a doctor suggested trying to increase your calories with a nutritional drink like Boost or Ensure? There is a Boost-Plus which has more calories than regular Boost. I've tried it and it's not bad tasting.
 
I went off my PPI after three years cold turkey. If I had read some of the information here first,I may not have done so. The first few weeks were awful as the acid floodgates were opened. It was painful to drink anything hot and I had to eat small quantities. If you are already underweight, I would think that you would not want to jeopardize what nutrients you are able to consume now. My advice would be to cut the last pill down to every other day and then stagger it out further.

I did not lose weight on PPI's but had a load of other side effects. You can read my experience on this page also.

Hoping good health is on the way.
 
marigoldgirl,

My experience with PPIs is that they reduce the stomach acid -- some but not all and don't affect absorption very much. Some acid is needed for pre-digesting like Pepsin for proteins and some other fooRAB but certainly not all fooRAB. Most digestion is done with many digestive enzymes in the duodenum put out by the pancreus.

Bile from the gallbladder and Lipase breaks down fats, Amylase breaks down carbohydrates, Cellulase for fiber, Lastase for milk sugar in dairy products except yogurt & kefir that are predigested and Pancreatin & Protase for Proteins.

Your doctor can test you for these and if you are deficient then take a digestive enzyme supplement before each meal.

The ones that my family uses now are Vegetarian Digestive Aid by Solgar and Essential Enzymes by Source Naturals.

I also suggest that you take a probiotic supplement to help make your system more friendly. There are over 400 strains of bacteria in your GI tract that is 28 feet long. And, they are in constant warfear.

Also, stomach acid is also a build in barrier for infections-- no germ lives in an acid environment.

My wife has been taking Prilosec for about 15 years for a swallowing problem with basically no side effects. She-- at 165 lbs is certainly not under weight.

I think a Doctor neeRAB to check to see if you are having pancreatic problems. Also, eating a more alkaline diet helps- 80% is recommended my most nutritionist.

I wish you well---Harry
 
Hi Marigoldgirl,

I thought that I would relate this story to you and others that read this thread-- it may also apply to other people's symptoms and may be a missed diagnosis of Acid Reflux??

My wife that has taken Prilosec for many years(15) for swallowing problems has had partiularly bad throat pain this spring with alot of esophagus burning.

I thought it was an infected throat at first and treated it as such with homeopathic remedies. The pain remained mostly -- burning when swallowing and not related to diet even empty swallowing result in pain.

I finally decided that the burning symptoms must be related to an acidic post nasal drip caused by the really bad pollen and allergy season this year and she did have a drainage but not that bad. I treated her with homeopathic remedies for Hay Fever with irritation from the posterior nasal drainage. The symptoms mostly went away in several days (75%) but not completely --.

So, I bought some 12hour Chlor- Trimetron -- allergy relief anti-histamine pills and the remaining burning pain went away in 3 days. But, she still has some drainage in the morning for several hours-- less but it is a bland drainage not irritating or burning her throat.

This original allergy type nasal throat burning drainage could very easily be mistaken for Acid Refux problems. Your throat along with your esophagus does not have any nerves to determine if the burning pain is produced by your sinuses/nose drainage or stomach acid??

I live in South Carolina andhave used homeopathy for over 35 years.

I wish ya'll well---Harry
 
Thank you for your advice. I have been on a variety of digestive enzymes off and on without many results and i have been on a variety of probiotics this past year as well without many results. I am not saying EVERYONE on prilosec has problems, but if you read these boarRAB, i am sure not the only one having a heck of a time with ppi's. My naturopathic dr has me on a alkaline diet that i began a month ago. My cousin is a naturopathic dr (in another state) and said although my problems are severe, she sees many with problems like mine from ppis. Since i've come off of one of the pills, i already feel my food being digested more comfortably than before and my gallbladder pain that started right after upping my dose last Oct has since vanished and my 3 month throat infection that was stumping drs has been quiet (and hopefully disappeared), but i still have many problems remaining.

I do wish prilosec, nexium, protonix or carafate was able to treat my problems for longer than a week or not have unbearable side effects but tis not the case and why i am still searching for answers.

Ps. I had alot of bloodwork in Jan 09 and everything was fine back then (right before all my GI woes began).
 
Marigoldgirl81,

I'm going through the same thing you are. All sorts of GI problems since my hysterectomy in Septeraber. Never had any problems before that. Started in the bowel, worked upwarRAB, hiatal hernia now, GERD, esophagitis and chronic dysphagia (trouble swallowing, inflammation in throat). Dr.'s are at a loss as to what to do besides prescribing higher doses of PPI's. Hate PPI's with a passion and they don't agree with me at all! Constant bloating, poor digestion and this chronic inflammation thing is driving me nuts. I've become a hermit because of this and on disability from work, before now I was very outgoing. I have a friend who's a naturopath but he's a bit far from me in southern Cal, although I'm in northern Cal. Funny thing is I'm from your state, (IN) and I would love to seek advice from your Naturopath as I'm fed up with conventional GI's. They're all on the same page with PPI talk, which only masks the problem and makes people worse and dependent like drug addicts. These Dr.s have to be in with big pharma! Anyway, I'm trying to decide how to come off these drugs (currently 60 mgs of Kapidex) but it's gonna be rough considering the rough shape my esophagus is in now. I also have some motility issues-don't know how things got so bad so quickly! I think drastic changes to my diet is the only way out, although I too have lost 30 lbs since surgery. Have to find fooRAB to keep my weight on while seeing a naturopathic Dr. Cannot afford any more weight loss. I've had every test in the book and about to have a capsule endoscopy (already had two upper endos and colonoscopy) so we'll see how that goes. Not very optimistic however, I really think my current GI (been through 4 of 'em) is out of ideas. All he says is, 'this is challenging.' Really growing weary of the whole process but I've gotten the best info from these types of forums. Dr.s either don't know enough or don't want to spend the time with you. They really are dictated to by the insurance companies and that's too bad. But enough of my rant, just trying to get some better help with my issues. Definitely coming off these drugs at some point, but don't want to get Barretts in the process. Any info would be appreciated. Btw, I've also tried DGL, Aloe, slippery elm, etc. Maybe I haven't given them enough time to work though. I'm currently taking advice about mastic gum, chamomile and L-glutamine. I'll try about anything at this point, I'm at my wits end, but will beat these PPI's!!! I don't even know if I really have "acid reflux" it could be bile, non acid reflux or some other cause. If I have to do a really restricted diet or puree my fooRAB, then so be it!!:mad:
 
Hello Harry,
You seem to be pretty knowledgeable on this stuff. I am on PPI's currently on 40 mg Protonix every other day and taking 150 mg Zantac the other day, as I am trying to wean off of these PPI's.
Just had an Upper Endo done about a month ago and Dr. found a small lesion in duodenum. Dr. had tried to do a capsule test as well but acid reflux was so bad that day they couldn't get capsule to stay and she had to "fish" it out. I had stopped taking PPI for 5 days prior to test and was anxious to take the test so was not surprised of too much acid.
I asked the Dr. if the lesion was a cause of taking PPI's long term and she said "NO" the lesion is atypical of too much acid in stomach. However, she agreed that I should try to get off of PPI's. So I don't understand if I have a lesion that has to be monitored (told me i needed another Endo in 1-2 years to check on that lesion), why would she suggest I get off of PPI's ? Now I am confused should I be more worried about long term use of PPI's or should I be more concerned about the stomach lesion?
I am most concerned that I have now developed LPR symptoms. Although today I had alot of sneezing, post nasal drip, and runny nose. So don't know if todays symtoms are allergy relataed or LPR (read your comments on this post about allergies vs acid reflux).
I would really appreciate any comments or suggestions.
Thanks for your time
 
Yeah, i'm in hell, like no joke...hell. I do my best to keep my head up, although i've lost nearly 40 lbs since this whole ordeal. The dr thinks its GI problems, they did a biopsy last summer and i had a cbc this Jan and all looked well, but no other recent tests than that, i am unfortuanately fearing drs and their treatments now, especially since my dr thinks its ridiculous that the ppi is what has made me sicker? How can you not wonder that?? Knock on wood i haven't had the throat infection come back since going off one ppi pill a month ago, but i'm in bad shape. I haven't many many/any people that have had such constant throat inflammation (esophagitis) for sooooo long...and it came on overnight? so stange. It did get better initially after prilosec but when i tried to stop it two weeks later all has been hell since and trying new ppis, etc. I am supposed to go to University of Chicago next week, but not sure yet, i am REALLY sick of being poked and prodded and not sure if i want to find out how many ulcers there are yet. I feel pretty ticked that after about 25 drs visits to 4 different drs i have ended up so bad so short. I cannot work now, i can eat about 10 pureed fooRAB, i can't lift my son up, i can't believe this is happening to me, there HAS to be an answer. The naturopath wants to try some things under my tongue and on my skin as to bypass my esophagus and stomach since they are a wreck...i just hope my esophagus is not in too bad of shape to not be able to get better. I truly think at this point going through the stress of another endoscopy would be worse than finding out where/what the ulcers look like.

On a positive note i was noticing a few changes on this strict program the ND has me on and then i attempted whole milk yogurt (to gain weight) and......last week was a very bad week, very bad, so recovering yet again...its one crisis to the next, i swear. This ND seems to really think that i am going to get better and he said he can't tell all of his patients that but he knows i will once he gets my hormones in balance, *sigh* all n' all, just plain rough. It is interesting to hear about people and how stress/hormones make gerd flare up/begin. He has some very interesting ideas about what is exactly going on in my body and hes quite convinced he can fix my was just healthy 28 year old body...until then i can't even go for walks b/c of burning too many calories, they need me to hold on to this weight i have left. I don't know if i'm doing the right thing...BUT i do know what i've been doing has made things incredibly worse.

Best of luck, do be in touch, i haven't met many like me whose entire gi system from esophagus to ibs are wreaking havoc and so relentless.

Ps. I have tried many of the aloes, dgl lic, manuka honey, dr said those are soothing but he has to get to the ROOT of the problem. He said i don't have 20 different things but one thing that is creating 20 symptoms. Thank goodness for this healtrabroadoard, although i feel like one of the more severe gerd cases on here, it gives me hope. I feel like i was transformed into a weak, frail girl that everyone thinks is either anorexic, cancer stricken, or on their deatrabroaded...not a good feeling...i LOVE food and can't wait to eat things again, oh how i love food. Again, be in touch on your journey, i am not positive if mine is ppis (don't want anyone else to go off theirs b/c of my opinion) BUT all signs point to yes for me.

Symptoms i went on prilosec for last June 27, 2009: (all was normal before then with minor bouts of ibs)

~one day felt like it was hard to get a deep breath in, diagnosed with esophagitis (but i was on medicines at the time i found out later that are known to relax LES). This was my only symptom for a week, no burning, no trouble eating, etc.

ps. I am now off all of those medicines


Symptoms i have now:(

-burning back of throat non stop for months, feels like a hole sometimes
-very red throat with white patches for many, many months now
-stange infections in throat that need antivirals or antibiotics without any colRAB, etc, wierd....and on minor papercuts, etc.
-gallbladder pains, spasms
-pains all over abdomen area, come and go
-gastritis, buning stomach at times
-after ppis, felt like a muscle was pushing up if i ate normal amount, very odd feeling and new
-ibs, i will look eight months pregnant after drinking water (notice this is more common near my period)
-tender spots randomly around belly button and intestines
-ear, throat and nose buring with acid at times
the list could go on, but i'll stop there.
 
Yep, not too many people suffering with my degree of symptoms, for sure. I"m glad to see you are off those meRAB...did you mean the ppi's too? I'm glad you're beginning to see some improvement, but I know you don't want to lose any more weight. I don't either, can't afford to. I'm also dealing with the inflammation in my throat and esoph and I'm not sure if it's getting better or not. I guess I'll have some idea about that after this capsule I have to swallow, which will pass through all my organs and be expelled in the bowel. The Dr. will then monitor and can see what's going on inside as it passes through. I don't want to have the PH study done because I have to stop taking the ppi's for that and I've only been on the Kapidex for about a month now. Before that, I tried Nexium, Prilosec, Aciphex, Prevacid to no avail. I had sensitivities to them so I couldn't stand them for more than 1 week or 2. Maybe that's why my condition has persisted for so long, don't know. I was also taking carafate, but that didn't seem to do much. I tried to come off the ppi's before and got serious rebound and my throat was like it had been torched so I tried another one. I don't know but I heard it takes about 1 year for the esophagus to heal? Then maintenance on ppi's? I don't want to do that at all. On the brighter side, even though I have constant heartburn after meals, I'm not sure but I think I have somewhat less inflammation in my throat since the Kapidex, but I'm having a hard time with bloating and lack of being able to pass gass (sorry) hasn't helped. These things I know are intefering with my digestion. Somethings got to give!! My naturopath friend is suggesting fish oil and he is supposed to give me some vitamins/supplements to take but he has not yet recommended a strict diet, which I think I need to be on. Are you allowed to do any kind of protein shakes for your weight?:dizzy:
 
thank-you so much, i have practically no weight to play with here, i'm not even supposed to be doing much lifting b/c my abdominal GI system is so inflammed and a wreck....and...it...all...began...after...ppi's.

ps. have many of your side effects disappeared yet? I do not think i am going to be able to start absorbing nutrients properly again/eating without refluxing everything until i get off these. My naturopathic dr won't advise people to come off/stay on drugs, for obvious reasons....i am thinking of skipping a day next week after i get out of this current flare up...:( what a fricken nightmare i'm in.

Arabra75~ I have had Gerd develop, gastritis, gallbladder problems, stomach pains, ibs, constant throat infections, refluxing every bite of food since.....last july now...yeah....and the list goes on. I am NOT the poster child for ppi's and yet find myself trapped on these things. Oh, and i'm 5'5 and now weigh 104 lbs....lost over 30.
 
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