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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
Hi Mary:

This is the end of my third week off Aciphex and on Zantac in my efforts to wean myself off the PPI's. I am still having a hard time. Some days are better than others. I went out of town for a few days and committed the sin of having a glass of red wine one time and a cup of coffee on another. Both resulted in horrible acid reflux that lasted for several hours in spite of antiacids. I am back home now and back to my stricter diet and we'll see. But I wish I could say that this is going in a linear fashion. It is not. I have decent days and then days when I feel a lot more acid and burning.

I got myself off Aciphex too fast I think and I would probably now wean myself off more slowly, but the jury is still out. If my symptoms continue as they are now indefinitely, I may have to go back to PPI's. I just want to give my body a chance to get through the acid rebound phase and see if I can control my symptoms with the Zantac and eventually with occassional remedies. I still don't know if I can.

In addition to the Zantac (150 mg twice a day-morning and night), I am drinking sips of aloe vera juice, using Gaviscon liquid here and there, Sucking on DGL and taking Melatonin at night. Not sure what else to use or try but to stay the course another two-three weeks to see if my symptoms start to level off and I can stay off the PPI's.

I wish some of the other group members who have tried this weaning off would come and post here to see if they succeeded long term.

But you can't stop taking them suddenly or the rebound will be awful. I was taking 20 mg of Aciphex, went down to 10 mg for a week and then to 5 mg for another week and I still experienced fairly severe reflux when I stopped and started the Zantac.

I don't want to become discouraged and will continue to post here until I succeed in becoming more symptom free or decide that I have to go back to the PPI (which I will regret).

All the best to you,

Rose
[QUOTE=marigoldgirl81;4195972]Its very interesting to read of your seperate ppi journey's. I have been determined to get off this ppi at some point and time when i get the reflux under control, but its not happening. I just went to ENT dr last night and i have a viral (possible herpes/shingles family) virus in my throat...it has been there for AT LEAST 4 MONTHS! I have been treated with 2 rounds of antibiotics with some relief but it never goes away and it tears up my stomach that already has gastritis.

I heard about a boof "Why Stomach Acid is Good for You" by Jon athon Wright but it must be out of print, hard to find. I seriously thing i am becoming more ill ON these ppis after nearly a year. Reasons why:

~Digesting my food, i have to hold my shoulders back for every meal and lots of bubbles and pressures have to happen and work there way out...never had this before. Before i was on double dose i could eat fairly normal amounts of food, now i have to e VERY careful, if i cross some threshold it is extremely painful and feels like a muscle is pushing it back out/it has no where to go, never had this before double dose.

~I am 28 and am now bruising so easily, BIG purple and green ones when i don't even remember the bump being that memorable.

~My throat is red and torn up with sores, i am truly wondering if its b/c ppi's don't allow your stomach to kill off all of the bad bacteria and i am getting infection after infection (or the same one) in my throat/back of tongue from where i hd/have esophagitis. Maybe i'm possibly chalking all of this up to the reflux getting worse when really my stomach just doesn't have the juice to digest food (I am still on a VERY strict diet months later and have not gained back my needed lost weight).

~My mouth is bone dry in the mornings, salivia is hard to come by anymore (i'd never had this problem pre-ppis) which is big, b/c i think saliva fights bacteria, hence all my painful infections.

The list goes on...those are a few that i can think of. In the past month i just finished my taper off being poisined by benzodiazepines for 3 years. Since being off my anxiety meds my stomach hasn't been burning?? I don't know if thats why, but i would get these awful sunburn feelings in my stomach and esophagus since right around when i began the double ppi dose in late Sept. I never had all these additional problems like constant infections (with no colds, etc), trouble digesting food, bloating after every meal since i began the double ppi. I am not sure if this is the right moment for me and my health to attempt to cut out one day off ppi's right now. Well, i'm pretty sure its not the right time, but then i fear when the right time will ever be having never been healed from these ppi's and my esophagus, etc worsening all along. Dr's are of no assistance and of course blame every detail on stress. When in reality, THIS is what is stressing me out. I want to live to see my sons grandchildren one day, ets, i am only 28. I feel so ill and have for so long now. PPi's are when my physical health started to take a turn for th wosre and the double dose is when i began to get gallbladder problems, the constant infections and now so much weight loss on an already skinny girl (not from stress, I AM hungry, but i have a hard time eating without all the sympyoms i listed). *sigh*

I wish you ladies the best luck, i know you can get off these, please keep posting, i want to get better and when i have another round of energy after this anti-viral i'm on hopefully, i want to try another way, i don't feel well on these ppi's.

Take care,
Marigold[/QUOTE]

Hi Marigold:

I am not a medical doctor, but don't they have antiviral meds to treat herpes viruses, shingles and those types of infections? If you have an active herpes virus infection in your throat, then there is no way your throat can heal until the infection comes under control. I am not sure how a PPI is going to treat that, though I understand the concept of not wanting that stomach acid to come in contact with the sores and irritate them even more.

What has helped me with the burning feeling in my throat is drinking aloe vera gel. You can buy it at the healthfood store as gel, juice or a tonic. The gel is very refreshing and you can hold it a bit in your mouth and throat as it goes down. It may help relieve your burning throat which I know feels just awful. I had some last night and it helped a bit. I find the DGL helpful but more as a preventive measure. It does not do much once the throat is irritated and burning.

Sorry to hear you are experiencing so much discomfort.
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!
Rose- Thanks for your post. Im currently at week 5 of coming off of Nexium and it has been pretty painful at times. Like you, I am determined to make it to at least 3 months to see if I really need the medication. I was put on it 2 years ago after I got a bacterial infection in my stomach while traveling in Brazil. I never had any reflux, burning, burping etc. Now I have all of the above. My decision to come off of it was do to the fact that I was getting constipated frequently and didn't feel like I was digesting my food properly. All of which are better when I am not on the meds. I find that some of the natural cures have helped me but only temporarily. Apple Cider Vinegar helped alot at first, Aloe Vera Juice helps sometimes, Papaya Enzymes helped but constipated me. I've gone the last week without taking anything but after 1 glass of wine last night have been in pretty bad pain all day leading me to take 1 Zantac 150 tonight (which helps only a bit). I hope I can get off these meds completely and also start drinking coffee, wine etc without medication. I am 28 and to struggle with constant stomach pain is challenging to say the least. Thank you for posting. It's comforting to know that others are going through this at the same time, support is so important. Oh and by the way my GI told me that he thought my stomach "might be" too weak to ever get off PPIs. I hope I can prove him wrong.

-Lauren
[QUOTE=Stellanyc;4214923]Rose- Thanks for your post. Im currently at week 5 of coming off of Nexium and it has been pretty painful at times. Like you, I am determined to make it to at least 3 months to see if I really need the medication. I was put on it 2 years ago after I got a bacterial infection in my stomach while traveling in Brazil. I never had any reflux, burning, burping etc. Now I have all of the above. My decision to come off of it was do to the fact that I was getting constipated frequently and didn't feel like I was digesting my food properly. All of which are better when I am not on the meds. I find that some of the natural cures have helped me but only temporarily. Apple Cider Vinegar helped alot at first, Aloe Vera Juice helps sometimes, Papaya Enzymes helped but constipated me. I've gone the last week without taking anything but after 1 glass of wine last night have been in pretty bad pain all day leading me to take 1 Zantac 150 tonight (which helps only a bit). I hope I can get off these meds completely and also start drinking coffee, wine etc without medication. I am 28 and to struggle with constant stomach pain is challenging to say the least. Thank you for posting. It's comforting to know that others are going through this at the same time, support is so important. Oh and by the way my GI told me that he thought my stomach "might be" too weak to ever get off PPIs. I hope I can prove him wrong.

-Lauren[/QUOTE]

Hang in there if you can. I am now a little over two months off PPI's and can say that I have barely begun to feel semi-normal. I was still experiencing pretty bad rebound by week five. Therefore, when gastroenterologists write that rebound can last up to three months, I believe it. You are probably going through the worst of it right now. Nobody ever told me about acid rebound or the dependency the PPI's can create. It just seems like such an easy medication to prescribe that I think doctors now have a tendency to overprescribe it without thinking too much about it. Then, we are stuck.

I cut down my Zantac from 150 mg to 75 mg twice per day a couple of days ago to see if I can further wean myself off prescription medications. If I can hold it at 75 mg, I may stay there for a while with the blander diet, low carbs and other remedies I have been trying. But it has been a tough two months, that's for sure.

Rose
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=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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