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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
Hi Rose,
I have had similar problems with Omeprazole and reflux. Was going through a rough time in my life with divorce and started having some abdominal discomfort, so my PCP put me on Omeprazole once a day. A couple of months later, I decided to try something for my anxiety related to the divorce, etc. and was put on Wellbutrin. Took the Wellbutrin for about 2 weeks and got intense anxiety and chest pain and ended up in the emergency room. Stopped the Wellbutrin and my PCP put me on the Omeprazole twice a day which gave me wicked GI upset with nausea and diarrhea. By this time, I had been on the Omeprazole for about 3-4 months and when I tried to stop taking the omeprazole, I think I developed severe rebound acid reflux. Didn't really want to take another PPI because I felt like I would continue to have problems with GI upset. Had an upper endoscopy which was normal but was told I probably had reflux and should start taking Protonix once a day (another PPI). In the meantime, I've had terrible chest burning and stabbing back pain and have just started taking Zantac 150mg twice a day. I'm determined to stay off the PPI and have heard it can take several months for the rebound acid reflux to resolve. I'm about 3 weeks without a PPI. This has been very disruptive for work and home life...I feel so bad that I'm afraid it won't get better! Any suggestions?
[QUOTE=col1mm;4214877]Hi Rose,
I have had similar problems with Omeprazole and reflux. Was going through a rough time in my life with divorce and started having some abdominal discomfort, so my PCP put me on Omeprazole once a day. A couple of months later, I decided to try something for my anxiety related to the divorce, etc. and was put on Wellbutrin. Took the Wellbutrin for about 2 weeks and got intense anxiety and chest pain and ended up in the emergency room. Stopped the Wellbutrin and my PCP put me on the Omeprazole twice a day which gave me wicked GI upset with nausea and diarrhea. By this time, I had been on the Omeprazole for about 3-4 months and when I tried to stop taking the omeprazole, I think I developed severe rebound acid reflux. Didn't really want to take another PPI because I felt like I would continue to have problems with GI upset. Had an upper endoscopy which was normal but was told I probably had reflux and should start taking Protonix once a day (another PPI). In the meantime, I've had terrible chest burning and stabbing back pain and have just started taking Zantac 150mg twice a day. I'm determined to stay off the PPI and have heard it can take several months for the rebound acid reflux to resolve. I'm about 3 weeks without a PPI. This has been very disruptive for work and home life...I feel so bad that I'm afraid it won't get better! Any suggestions?[/QUOTE]

Hi Co/1mm:

Sorry you are going through a divorce. I know the stress and upheaval don't help the body heal. I am sure they keep your tummy churning. I had horrible rebound until about two weeks ago and I feel I may have just started to turn the corner and see a life without the darn PPI. I can't predict how it will go for you, but I think it can get better. If you are at week three, you are probably still in the thick of it. Hang in there if you can and feel you can play this out for a bit.

What I did wrong when I started the weaning off process was to get off the PPI too quickly. I was off them a week when I started to experience the rebound. However, by then I was a week out and did not want to start the cycle all over again. That was the last week of January.

This is what I have done to deal with this rebound phenomenon. All this may or may not work for you.

1) I took 150 Zantac twice a day until a couple of days ago when I reduced the dose to 75 mg Zantac twice a day. I'll see how it goes and will go back up to 150 mg if I feel I need the higher H2 blocker dose. I tried Pepcid too, but the Zantac worked better for me.

2) I found that a low carb diet has helped me. Try to reduce carbs as much as possible if you can and eat more lean protein, nuts and veggies (along with some fruit). For a while there, I was eating a lot of dairy, rice and potatoes and, tough bland, that type of diet was not helping me. For whatever reason, the stomach produces more acid to break down the carbs.

3) No coffee, alcohol and other acid producing foods. I think milk and dairy go into that category. I now drink almond milk and take my calcium citrate pills twice a day. I think decaf coffee has a lot of acid too.

4) Don't eat close to bedtime and don't go to bed with a full stomach.

5) I started drinking aloe juice but I now take aloe pills and slippery elm pills in-between meals. I also suck on DGL. I chew sugarless gum after meals for about an hour whether I have heartburn or not. I think it helps produce more saliva and aids with digestion. It is not hurting and I think it may be helping me.

6) I never take any pills, including vitamins, on an empty stomach.

7) Read all you can. Reading about acid rebound did not make the rebound any easier to deal with, but understanding the process better has helped me to make better decisions regarding whether or not to wait it out. If I had not come here and read old posts, I would have probably been back on the Aciphex within a week. Nobody can live through this rebound misery forever. On certain days I was experiencing heartburn for five or six hours non-stop.

8) I use liquid Gaviscon as a last resort when I experience heartburn, particularly if my stomach is bothering me before bedtime. I don't want to take too much because it has aluminum and a lot of aluminum is not good for you. But Gaviscon is a God-send when I am having one of my "heartburn attacks" that can last for hours.

I think this has been it in a nutshell. I don't think PPI's are evil, but I am upset my doctors never informed me of side effects (possible osteopenia or osteoporosis, acid rebound, etc). I was simply told I had GERD, and would need to be on the PPI forever.

Best wishes to you and please post and let us know how you are coming along. I have had some really bad days when I thought I had to take that PPI and here lately, I have begun to have more "better" or "good" days. I hope I can continue to stretch those out.

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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