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Acid Reflux / GERD Message Board


Acid Reflux / GERD Board Index


I wanted to share my story and see if any of the veteran group members have suggestions or feedback. This is my first new threat on this forum.

I was diagnosed with acid reflux approximately three years ago via endoscopy and placed on Aciphex (20 mg). Within days, my symptoms went away and I was able to eat, drink and resume my normal life without symptoms of heartburn, nausea, pain, etc. I felt I was the most fortunate person on earth, and went on about my business. I was told the Aciphex was safe and I could continue to take it indefinitely. Therefore, for two years my PCP refilled my prescription and I faithfully took the medicine without a worry. I must say that I never bothered to read any literature about potential side effects since both the GI doctor and my internist felt very comfortable with me taking it long term or as long as needed. Nobody brought up the issue of bone loss, increased risk of hip fractures or acid rebound, and I was too busy to bother to look any of it up.

Fast forward to this past December. I went in for my regular annual physical and happened to have a Dexa bone scan as part of my checkup. I had undergone one two years prior as a baseline which was normal, but because I am now going into menapause at 54, my internist wanted to repeat it. To everyone's surprise, it was discovered that I have advanced osteopenia on both hips, which the doctor assumed is likely due to the Aciphex (since my body is still producing estrogen and I am a fairly active person).

The internist's and OBG's unequivocal recommendation was that I immediately begin to take Actonel (the once a month version). When I brought up all the potential nasty side effects (I did my homework this time) and my concern about this drug's effect to simply let old bone build up and prevent cell turnover, they both said I should still take it. What if I develop worse symptoms of GERD? Then, they said, I should simply double up on the Aciphex, and so on.

I was very upset for a couple of days and kicked myself for not having done the research on the Aciphex and increased risk of osteoporosis. in the first place. I then called the doctor and asked her nurse whether it would not simply be more beneficial for me to get off the Aciphex or switch it to a less potent medication like an H2 blocker while I simultaneously increased my exercise and intake of Vitamin D3 and calcium. I still got the same response. Just take the Actonel and increase the Aciphex as needed to deal with any GI side effects of the Actonel.

I made the decision to withdraw the Aciphex on my own, but did so very quickly over only the course of two weeks. I had not heard of acid rebound, but intuitively knew that my body was likely dependant on something I used for nearly three years. I switched to Zantac 150 mg twice a day, began to take more calcium citrate with 1000 mg of vitamin D3, and braced myself for what was to come.

The first week off Aciphex and on Zantac was incredibly rough. I ate a lot of Tumms and experienced a lot of rebound acid. I found this board where I learned about acid rebound for the first time, and felt a bit of hope that perhaps I could slowly weane myself off the medicine. I realized my mistake of having withdrawn the Aciphex too quickly, but I thought it was too late to go back now that I had been without it for a week.

Today is the fifteenth day without Aciphex and I must add I have some better days and worse days. I am still on the Zantac, but have used less Tumms and Gaviscon, and gradually added some natural remedies. I am taking tablespoons of Aloe Vera juice which I find soothing (though it does not taste good). I suck on DGL several times a day (though the effect lasts very little) and have started the Melatonin at night. I am doing a little bit better as the days go by, and hope to be able to come back and report again my progress in another week or so.

I have learned a few hard lessons. First, I have learned to always do my homework. All medicines have side effects and some type of trade off. I have been trading off the health of my bones for the luxury of eating whatever I wanted whenever I wanted. Second, I still like my personal doctor, but I will never blindly follow her advice again. I have realized that physicians today have no time to solve puzzles. It is easier for them to give me another pill than to sit down and sort through options. I feel I am a motivated and health conscious individual who will try other methods to restore bone health. Yet my doctor simply wants me to take this new medicine, Actonel, which to me sounds like poison to the body, and then take even more Aciphex to deal with the side effects of the Actonel when the Aciphex is what most likely caused the rapid loss of calcium in my hip bones. That just sounds crazy to me unless I absolutely have to stay on the Aciphex which I am not convinced I have to.

I am not optimistic that I will be able to get off the Zantac, but I am hoping the Zantac will give me enough relief that I will be able to stay on it or a reduced dose while I follow a healthy diet. I am also hoping the Zantac does not interfere as much with calcium absorption so that my hips do not develop full blown osteoporosis if I continue a regimen of exercise and the calcium with vitamin D3.

I don't know if the natural remedies will help, i.e., Aloe and Melatonin, but will continue to use them to see if they speed up the process and cut down on the acid rebound.

I guess the question has been asked and I have seen several older threads, but are there any of those folks who were trying to get off PPI's a couple of years back still around and did they succeed? Are there any other natural remedies that have helped them?

Neither ginger nor ACV helps me but rather give me more heartburn and irritation so I have stayed away from them.

I just wanted to share my story. Those folks who need to be on PPI's need to be very watchful of their calcium intake and have regular Dexa scans. Had I had one last year, I would have discovered the calcium loss sooner.

Thank you all for "listening" and I appreciate any comments or sage words of advice from the group's veterans.

Rose
[QUOTE=tata55;4196729]I am taking aciphex and have tried other things but the pain without aciphex is so severe I can't handle it. I have 3 kids and my oldest has had to help alot due to stomach issues. I have tried protonix, prilosec, nexium, I still have to use aciphex and I take donnital daily and at times have to use green lizard. I have actually thought I was having a heart attack but it was all from acid reflux. I have been to ER alot and they would give me green lizard and send me home and that has been going on for 4 almost 5 years. Since they gave me my own perscription of green lizard I don't go to ER much anymore. I have also had hysterectomy and on hormone shots but sometimes to have less pain in one area you may have to take a medicene that might cause problems somewhere else.[/QUOTE]

Hi Tata:

I am so sorry to hear you are going through so much pain and discomfort. I am fortunate that the worst I have experienced is moderate heartburn, nausea and indigestion here and there. Enough to make one's life miserable, but I have never had to go to the ER thinking I am having a heart attack. I can't imagine how frightening that must be. My symptoms clearly come from my gut and do not mimic anything else.

I took Aciphex for nearly three years and it was very, very effective in cutting back reflux for me. I was completely or nearly completely asymptomatic. I decided to stop taking it two months ago for fear I would develop full blown osteoporosis.

I am not sure everyone can go off PPI's and you may be one of those people who needs to keep taking the Aciphex. It is a blessing if it works for you and lets you lead a normal life, take care of your kids, etc. I am not even sure I'll be able to stay off it longterm. But I am going to try at least to stay Aciphex free for a few months to see if my current symptoms are related to acid rebound or they start to go away. I recently learned that acid rebound can last up to two months and even longer.

Since you mentioned you have had a hysterectomy, make sure you up your calcium intake to 1200 mg a day and take vitamin D3 along with it for better absorption. My doctor recommended 1000 mg of vitamin D3 daily along with the calcium. She also told me to space the calcium intake through the day rather than take all four pills at once. I have recently found out that the best form of calcium is calcium citrate, as in Citracal, because calcium citrate can apparently be absorbed more easily by the stomach with or without much stomach acid. No doctor gave me this information when I started taking Aciphex at 52, also at the onset of my menopause. I wonder if I would now have osteopenia if I had been warned to take calcium and the right type of calcium. I now know all this information was out there in 2007. I have read old posts here that date back to 2003 or so.

I want to make sure I am not encouraging anyone who should be on PPI's to get off PPI's. My decision to try to get off PPI's was a personal decision based on the discovery that I was losing too much calcium from my bones while on the Aciphex. I started to post here because I knew nothing about this process or PPI side effects or basically anything when I decided to run the experiment and see if I can taper off to a less potent antisecretory drug. I have been reading a lot and learning a lot through this board since the beginnig of January. I don't think I would have made it through week six off PPI's if I had not started to post here, received so much feedback, information and support. I am learning every day.

Rose
[QUOTE=TVC15;4199237]I started taking powdered AsorbAid after meals about one day ago and immediately felt better. This morning, I took the AbsorbAid after a light breakfast, then took calcium & magnesium powder. Now I have bad indigestion & heartburn. My breakfast was bland, so I know itís not the food. And since I took the AbsorbAid with other meals, I know itís not that. Has anyone experienced heartburn from a calcium/magnesium combination?[/QUOTE]

Hi TVC:

I have noticed that I have to be careful when I take any supplements (vitamins, calcium, fish oil, etc) because they will irritate my stomach if I don't take them with actual solid food.

I usually split my calcium supplements into two daily doses and I had been taking the morning one with yogurt. I noticed that I was developing stomach ache and some heartburn even though I was also taking an H2 blocker in the morning. Therefore, I have now switched that first dose to lunch or eat a bit more in the morning if I take my pills in the morning. I have not had heartburn if I take the vitamins with a heftier meal, i.e., lunch or dinner.

So it is possible supplements may be irritating a stomach (or rather esophagus) that is already irritated by reflux.

You mentioned your breakfast was bland. It may have not had enough substance in it or perhaps even a little fat to buffer those supplements.

On a separate note, I have to tell you that I have good days and bad days that appear to have nothing to do with what I do or don't do or take or don't take. I practically eat the same thing every morning and lunch and I can have heartburn and discomfort some days and not others. It is frustrating for sure. I eat bananas, yougurt, cantaloupe, crackers, rice pudding, a small sandwich, almond milk, green tea with honey and that type of thing during my typical day. I eat throughout the day and eat small portions of the foods I mentioned. I also drink plenty of water, etc.

I always worry about dinner time because that is when I have time to have my heaviest and heftiest meal (If I am going to have meat or something like that it will be in the evening) and I rarely get heartburn after dinner. I do eat early and don't eat large quantities of anything. That is what is so frustrating about this GERD business. I am also fortunate to not have reflux at night when I sleep. My stomach seems to go to sleep when I go to sleep.

On another subject. This is the beginning of my seventh week off PPI's. I started this post a few weeks back when I decided to go off Aciphex. At first, I did not know what the heck I was doing or what to expect and, honestly, I did not think I could last two days off the Aciphex. I did not get much support from my family doctor who suggested I try Pepcid as a substitute, but said good luck and gave me another prescription for Aciphex anyway.

I don't get severe hearburn every day now, but still have it every two to three days and probably have some mild heartburn, stomach pain and discomfort at least once a day. Chewing a lot of gum after dinner seems to help get that food down and digested, and the heartburn away.

I recently decided to switch from Zantac 150 mg twice a day to Pepcid 10 mg twice per day. I have been told Pepcid is a newer H2 blocker and lasts a bit longer. I have been taking Pepcid for two days and, if it does not work better after a week or so, I may then go back to Zantac. I am trying to stay off the PPI.

From what I have been reading, acid rebound from PPIs can last up to three months and longer. Gastrin levels (hormone that helps produce acid) apparently rise in the blood as a result of the acid suppression caused by the PPI use. Gastrin levels in one's blood then have to go down and level off upon PPI discontinuation, and then all those extra proton pump cells that were created by the excess Gastrin have to die off. Therefore, it is not a one to two week deal apparently. My sense is that one's stomach has to be sort of reprogrammed after the cessation of the PPI's, and that change may take a long time. We truly become dependent on those medications.

I have been reading a lot on the subject and learning a lot even from finding medical journal abstracts online because I have not been able to get a straight answer from any of my doctors. Nobody really knows for sure and nobody was too supportive of my idea to go off the PPI.

At this point, I don't know what part of my symptoms are due to PPI rebound and what part to the disorder (GERD) that led me to take PPI's in the first place. Unless I stick it out and stay off those PPI's longer, though, I am not going to ever find out.

Therefore, I am still off PPI's, trying to be very disciplined with food, taking my supplements and now Pepcid and watching how things develop.

TVC: I'll look into AbsorbAid to see if that is something that might help me. I started taking Align at another poster's suggestion and that seems to be helping with the gas and bloating, if not the heartburn.

Thank you everyone for posting your experiences and suggestions.

Rose
Hi all. I am so glad I found this thread. I've read through all posts and much of the things I am already trying or have tried.

Uggh! Where do I start? I am 41, female and I, too am very frustrated with the medical profession because I feel they do not want to help find a solution to the problem, only put a bandaid on it. My doctor, who I have not been very happy with for a while, always seems to whip out the script pad and pen every time I go there.

I'll try to make a long story short. I've been on Aciphex for about 10 years!!! I was so naive and let them keep prescribing this for years before I did a little research myself and found out what you all already know. I can't really remember every detail from 10 years ago but I DO know that I did not even have any heartburn or burning of any kind or anything I have now. I am a worrier and I was going through a little stressful period then (brought on by myself) and I remember having a little stomach issue. I think (if my memory serves me right) I was prescribed Zantac...at that time it was by prescription only. I had an endoscopy and Barium Swallow somewhere in that time frame and then was put on Aciphex. Like I said, I can't remember why or exactly when but it's something like 9 or 10 years ago. I have had no problems with side effects all this time with the Aciphex. I could eat anything and everything with no problems.

Fast forward to last September. I was going through a stressful time at work and I had two vacations scheduled in two months time. I started having the lump in throat sensation and felt a tightness at times in my chin/throat area. No other problems. I figured it was because I worried myself to death, or sickness...whichever comes first. Now I'm thinking maybe the Aciphex was starting to fail me back then. At the same time, my insurance wanted a cheaper alternative to Aciphex so my doctor said Omeprazole would be OK. So I worried about this. This is when I started my research about coming off of PPI's and the acid rebound effect. I was a little scared but I tried going cold turkey the beginning of this year. I totally reversed my diet. No common trigger foods, no alcohol (don't drink anyway), drink only water, exercise, do not eat with 3-4 hrs of bedtime, etc. etc...you name it. I started taking digestive enzymes with probiotics. I lasted about 2-1/2 weeks. The reason I went back on was not because it was unbearable. The reason I started back on the PPI's was because I felt like I was doing damage. I did not have any stomach pain whatsoever. Only heartburn and chest pain. My stomach never bothered me and I don't have problems at night (knock on wood).

I went back to the doctor and started the omeprazole, which took away the burn but didn't seem to work as good as the Aciphex. Got another Barium Swallow and it showed severe reflux (duh?). I got my insurance to give me the Aciphex again. However, I've been on it for 5 weeks and it does not seem to work like it did before. Sometimes I feel like I'm having side effects of the Aciphex. Is that even possible when I didn't have a problem before? Now I'm thinking...what have I done?

I really want to go off this drug. I'm doing everything I can as far as my diet and lifestyle changes. I am on 20 mg, enteric coated so I cannot split the pill. I've been thinking about weaning myself off starting 3 days on, one day off. I've thought of using Zantac on the off day but it says not to use with other acid reducers. Has anyone done this?

I was thinking I should see a GI doc and tell him what I'm doing but I feel like he's going to give me the "why would you want to do that" speech. I'm just so frustrated.

What I have started in the past week (while still on Aciphex) is:
DGL Licorice, 400 mg before each meal, which seems to help...how much of this is safe to take in a day?
Digestive Enzyme with Probiotics with each meal
I am waiting for my Calcium Citrate Powder to arrive
I have Aloe Vera juice but have only used it once. Is once or twice a day enough for this?

I would appreciate any feedback as this is a frustrating situation....as you all know.

Thanks!
Hi Flyerfan:

We have similar stories, except that I was on Aciphex for only three years. I thought Aciphex was a wonder drug. Once I was put on it, I could eat and drink anything and everything I wanted with no reflux or heartburn whatsoever. Aciphex was my best friend. As you have read through this thread, the reason I decided to get off Aciphex was my discovery that I had developed osteopenia (the precursor to osteoporosis) during the three years I had been on the Aciphex. I had a normal Dexa scan as a baseline the same year I began to take Aciphex. I am now 55 and my gynecologist suggested another one this past December. I was shocked when the scan came back showing advanced osteopenia on both hips. I must add I am in the midsts of menopause, but still having periods every two-three months. Therefore, my body is still producing estrogen and the consensus, even by all my doctors, was that the Aciphex was likely interfering with calcium absorption and the main cause from the change in the Dexa scans over a three year period. Much to my surprise, neither of my doctors suggested I get off Aciphex, but rather both independently suggested I get on Actonel, another type of drug I want to avoid at all costs. Biphosphonates are an entirely different story worthy of starting an entire new post.

I have been off Aciphex now seven entire weeks. Had I not read about acid rebound (neither doctor told me either before I was put on the Aciphex or recently when I announced I wanted to get off). But, I was prepared for several weeks of misery. I have read rebound can last up to three months.

I am currently taking 150 mg Zantac twice a day (morning and night). I recently started taking a regime of orange peel extract (D-Limonene extract) every other day for twenty days along with the DGL, digestive enzymes and probiotics.

I am always reading to see what else I can find out there and the latest I read is that a low carbohydrate diet can significantly help to lessen acid production and reflux. Therefore, I began to slowly cut back on carbs over the past three days and must admit I feel better. I have had two-three decent days of being nearly symptom free.

Tomorrow is the beginning of my eighth week off Aciphex. I hope I have begun to turn the corner and stop experiencing daily bouts of heartburn. The theory behind rebound is that the body produces excess gastrin (hormone) as a response to the PPI's. Once the PPI is removed, the gastrin signals the parietal cells in the stomach to start releasing acid and what we get is an acid storm that can last for weeks until gastrin levels normalize and we return to a baseline of symptoms (whatever you were experiencing when you were put on PPI's in the first place).

From what I have read, you can supplement your PPI with an H2 blocker like Zantac during the withdrawal phase. I was able to cut my 20 mg tablet of Aciphex in half and took 10 mg for a few weeks before I finally went off it completely and began to take the Zantac. The first few weeks, as you have stated, were pretty horrible. Besides heartburn, I had stomach pains, horrible gas, pain in the pit of my stomach, you name it. I started this post to receive support from the forum, but also as a way to track my progress and, hopefully, so others like you can read about my journey and make the best decision for themselves.

I think cutting down on carbs is helping me along with the orange peel extract capsules. Cutting down carbs is difficult as I soon realized I was eating a lot of carbs through yogurt, milk, potatoes and other foods I thought were good for my stomach because they were "bland." Apparently carbs force the stomach to produce acid, and a diet low on carbs reduces stomach acid and reflux. I am not a scientist, but have already read about this from different sources and different internet sites. Apparently the acid produced as a response to ingesting protein is used to digest that protein and does not linger in the stomach.

My suggestion to you if you want to try to get off Aciphex is to do so very gradually. I am not sure why you cannot cut your pills in half and gradually taper off. You'll probably have to go on an H2 blocker like Zantac or Pepcid as well as a low carbohydrate diet. Once you start to wean yourself off, then get set to likely experience weeks of discomfort. Besides the H2 blocker, I was supplementing with liquid Gaviscon, DGL, and chewing an awful lot of gum between meals. Somehow, chewing gum helped my digestion.

I am not sure everyone is meant to be off PPI's and perhaps you need your Aciphex. Who knows whether I'll be able to stay off Aciphex long term. For sure, I am going to have to be more disciplined, stay off coffee, alcohol, all those starches, etc. I am being very, very careful right now and I am going to try to give the Aciphex a run for its money.

I don't think my reflux will ever be "cured." I have accepted it is a chronic condition and I'll probably have to take some type of medication my entire life. At this point, my goal is to try to use the H2 blockers rather than the PPI's. H2 blockers have not been associated in the literature with hip fractures or stomach tumors, likely because they are not as effective in blocking the production of stomach acid as the PPI's.

It was the panic of fracturing a hip that led to my decision to try to get off and stay off Aciphex. I am not saying it is a "bad" drug. I am only saying it caused problems with calcium absorption for me, and I made the decision to get off it rather than add another type of drug (Actonel) that is associated with another host of bad side effects that, ironically, include heartburn.

Good luck in your quest to get off Aciphex if you feel that is the right decision for you. Be prepared it will not be easy and arm yourself with all the information and support you can.

Sadly, I have received no information and little support from my doctors. Neither doctor told me about the calcium malabsorption with PPI's or acid rebound. I have found all this information on my own.

Rose
[QUOTE=seebrown;4217766]Hi, everyone, I just found this thread, and I can't believe I didn't realize what I was putting in my body for the last few years. I was diagnosed with acid reflux 5 years ago, and was put on ranitidine (Zantac) for a month. After the month was up, my symptoms returned. I was prescribed with another month (higher dose) with the doctor suggesting I move to omeprazole (Prilosec) if the ranitidine didn't work. The ranitidine didn't work again, but i continued to take it and stopped going to the doctor since she had mentioned the drug was OTC, and I could self-prescribe.

About 2 years ago, I switched to omeprazole when it started being available OTC because I'd had to continue to increase my ranitidine dosage while also taking Tums every few days. I've now been taking omeprazole for 2 years without supplementing calcium!!! :eek:

I do no eat fatty/acidy foods and am a healthy eater, but I do drink coffee daily. I started looking online for alternate treatments because my acid reflux seems to be worsening lately. I wasn't sure what could be causing the increased acid, but I don't like taking omeprazole anyway because I feel like the food I eat sits in my stomach without being digested fully.

I am in my early 30s, and I realize I need to find an alternative to the omeprazole, but, like everyone else who has posted, everything else I have tried has been without success (ranitidine not being strong enough even with healthy eating). I actually recently had a spinal x-ray at the chiropractor due to some back pain, and the chiro said I had phase 1 spinal decay and this usually doesn't show up in someone as young as I am. I'm wondering now if it's the omeprazole! :(:(:(:eek::eek::eek:

Has anyone tried an alkaline diet < edited >? Does anyone have any advice for how I could start weaning myself off of omeprazole? I think I'm going to buy Aloe Vera juice and DGL tablets and start eating alkaline, but should I just go cold turkey with the omeprazole - maybe switch it to a high dose of ranitidine (I tried making this switch last year with no success, felt nauseated all the time and had a lot of acid reflux)?[/QUOTE]

I think the consensus is to NOT get off the PPI's cold turkey. I almost did that and have suffered a lot. I tapered off a bit and then went from the PPI to Zantac and experienced a heck of a rebound.

I have good days and bad days on Zantac. I don't know at this point how much of what I am experiencing is still rebound and how much is just my GERD. I have experienced nausea and heartburn today on and off on the same dose of Zantac (150 mg twice a day) after three or four pretty good days.

I am like you. All the natural remedies seem to help a bit, but do not seem to have the same impact they do on others. I have tried aloe juice and capsules, orange peel extract capsules, cutting carbs, taking DGL, etc. with limited success. I read all the different posts about using probiotics and then feel frustrated when I am throwing everything and the kitchen sink at my heartburn and it seems to have a mind of its own. I now follow a pretty predictable diet of foods that typically do not produce reflux for me and I still have days of pronounced heartburn regardless of what I eat.

I frankly still don't know if I'll be able to make the permanent switch to Zantac or I'll have to return to the PPI eventually. I don't mind followig a strict diet and I no longer drink coffee or alcohol and I still experience symptoms. Therefore, it is frustrating.

I am on my second month off PPI's and I said I am going to give it three months before I decide whether I can stay off the medicine or will have to return to the PPI.

My suggestion to you would be to cut off the coffee to see if that has any impact on your symptoms and start cutting back on the Omeprazole very slowly and gradually. Going cold turkey is probably going to be painful and not effective if in the end it forces you to go back on the PPI.

I will keep posting here until I finish my three month experiment and make my decision to stay off the PPI or go back on it. I would like the other members who are struggling with this to know the eventual outcome of my situation.
At this point, it appears that I can have two-three good days and one day of reflux and heartburn regardless of what I eat or don't eat and in spite of using Zantac. If that is the course of this disorder for me, I will then eventually have to decide whether I will continue to live with these symptoms or go back to the PPI.

As you know from reading these posts is that what got me to quit the PPI was the discovery that I had developed osteopenia in both hips after two years of using Aciphex. The Aciphex worked great, only I did not know it was not allowing my body to absorb calcium.

But please, do not go off Omeprazole cold turkey. I think that is the one mistake I made and others have also posted about that in here through the years.

Rose





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