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  • Getting off PPI's and acid rebound

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    Old 03-30-2010, 07:17 PM   #76
    rosebloom
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    Re: Getting off PPI's and acid rebound

    Quote:
    Originally Posted by ksc1968 View Post
    Im just starting this journey, Im only 4 days in and so far so good. The first 2 days I did have some burning, like a hunger feeling. I was about to try to take Kapidex, as my prevacid hasnt been working, but spoke with my dr again over the phone when insurance wouldnt cover the Kapidex, and he said my problem could be related to low acid (he says he cant say it is or it isnt without trying, and the PPI has never completely taken away my problem, so he says he just doesnt know 100%), and lets step me down from 30mg to 15, 5, etc. To get to the 5mg dose I will be dumping 2/3 of the prevacid out of the capsule (very informal),
    I have also added absorbaid with lunch and dinner, so I dont know if its helping or not yet, too soon to tell. I am very hopeful and kind of excited for this journey as I cant wait to find out if I can be free of this expensive habit! THere is some insecurity involved that at the first attack I will want to jump back on the PPI, but I have to at least give it a chance. Maybe all of my other problems are perhaps PPI side effects.
    Good luck to anyone else while on this journey!
    God Bless
    It sounds like you are going at it the right way by slowly reducing the PPI. Then, if your doctor agrees, you can switch to a less potent H2 blocker for a while and eventually wean yourself off the acid suppressing medicines altogether, which now your doctor is not even sure you need.

    Good luck to you and please keep us posted. I would love to hear how others are doing and if they have been successful and getting off PPI's.

    It is my intention to stay off PPI's, but my goal is to stay off at least three months and re-evaluate about my quality of life without them to see what the trade off is.

    At least, I want to be able to find out what is rebound and what is my disease.


    Rose

     
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    Old 03-30-2010, 07:24 PM   #77
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    Re: Getting off PPI's and acid rebound

    Quote:
    Originally Posted by Stellanyc View Post
    Rose- Thanks for your reply. Im glad to hear that you have turned a corner... what a long process. I just started Zantac 150 2x a day. I felt much better today than I have over the last week (I hadn't taken a PPI in over a wk and it was getting very painful). Im afraid that after 3 months I'll need to go back on it... cant remember what symptons actually made me go on it in the first place. I just remember having upper GI pain. Anyway... keep me in loop to how you are doing. Hopefully you only have a few more weeks!
    I hope it starts to become easier for you and we all keep posting updates here to keep each other going and see if we are able to stay off.

    I started this post when I was exactly in your position six or seven weeks back and in a lot of discomfort.

    One big difference for me this time is that, when I went on the PPI's almost three years ago, I did not alter my diet or lifestyle one bit. The PPI made it possible for me to drink coffee, drink alcohol and eat whatever I wanted at whatever time of the day or night. The PPI just masked my problems rather than solved them. I am now being forced to make dietary and lifestyle changes that I hope will help me stay off PPI's with less medication or at least medication that does not rob my bones of calcium, like the PPI did to me.

    Rose

     
    Old 03-31-2010, 06:40 PM   #78
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    Re: Getting off PPI's and acid rebound

    It took me a while to read through everything. Wow it is frustrating. I am a 36 yr old male that started symptoms for the first time three months ago. I have been on ppi's for about a month. I could go on but it is late for me. This thing really takes away from life, it drains me, makes me grumpy, trashes my social life etc.

    Recently my chiropractor handed me a six page handout about gluten and wheat reactions. Very interesting article. I may try to cut them out. It will be worth it considering how much this sucks! It talks about how the inability to digest gluten can happen to anyone at anytime in their life. Symptoms can include acid reflux, stomachache, bloating, PMS symtoms, etc. It is worth the read. Take care and good luck to everyone!

    Last edited by Administrator; 01-23-2013 at 08:15 AM.

     
    Old 03-31-2010, 07:19 PM   #79
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    Re: Getting off PPI's and acid rebound

    Quote:
    Originally Posted by upnorthman View Post
    It took me a while to read through everything. Wow it is frustrating. I am a 36 yr old male that started symptoms for the first time three months ago. I have been on ppi's for about a month. I could go on but it is late for me. This thing really takes away from life, it drains me, makes me grumpy, trashes my social life etc.

    Recently my chiropractor handed me a six page handout about gluten and wheat reactions. Very interesting article. I may try to cut them out. It will be worth it considering how much this sucks! It talks about how the inability to digest gluten can happen to anyone at anytime in their life. Symptoms can include acid reflux, stomachache, bloating, PMS symtoms, etc. It is worth the read. If I can find it online I'll post the link if I am allowed to on this forum.

    Take care and good luck to everyone!
    I am trying to cut down on wheat as well but I am not sure about all the products that have wheat. I am eating a diet low on carbs and that means eliminating a lot of bread and dairy for the time being. Low carbing seems to help my reflux. I wonder if the low carbing also means I am avoiding wheat/gluten. Worth reading more about.

     
    Old 04-02-2010, 12:45 PM   #80
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    Re: Getting off PPI's and acid rebound

    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!!!

    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!

    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)?

    Last edited by hb-mod; 04-02-2010 at 02:07 PM. Reason: Please do not post disallowed Internet websites, per Posting Policy. Thanks!

     
    Old 04-02-2010, 07:45 PM   #81
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    Re: Getting off PPI's and acid rebound

    Quote:
    Originally Posted by seebrown View Post
    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!!!

    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!

    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)?
    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

     
    Old 04-05-2010, 04:36 PM   #82
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    Re: Getting off PPI's and acid rebound

    Thanks, rosebloom! I'm interested to hear how it turns out for you. I think I will slowly-slowly-slowly try to switch to ranitidine and phase out caffeine (which will be really hard). I tried skipping a pill on Saturday and by the evening the acid was lurching, so I ended up taking one. I'm taking calcium supplements now, but I'll probably visit the doctor to get further advice. I worry that even with the calcium supplement, I may end up having a problem later. My dad has been on a PPI forever, so I never really thought anything of it, especially since early on my doctor said I could be switched to a PPI, and my pharmacist said the OTC version should be fine to take indefinitely.

    Last edited by seebrown; 04-05-2010 at 04:37 PM.

     
    Old 04-06-2010, 01:09 PM   #83
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    Re: Getting off PPI's and acid rebound

    I have had two pretty lousy days of feeling nauseous and with heartburn on and off (not the worst kind like in the early days off PPI's but annoying enough to keep me in a bad mood). These are the days when I feel so tempted to go grab that bottle of Aciphex and pop one in. The sad thing is that I am being very good about my diet trying to keep those carbs low and not eating offending foods. I am also religiously taking the DGL (which is why I may be nauseous rather than have horrible heartburn. It is probably coating and protectig my stomach a little bit). But this thing definitely has a mind of its own, and today I feel like it is defeating me (sigh).

    I have read so much stuff and I am trying so hard to eat alkaline foods, low carbs, no coffee, alcohol, sodas, junk, etc. and I am still experiencing moderate symptoms almost daily (with the exception of little phases of three or so good days here and there). For a while I thought I had turned the corner but I now seem to have taken three or four steps backwards.

    Again, I don't know if this is just the disease itself and what I am left to deal with or I am still experiencing acid rebound. I will stick to the plan until April 24th when it will be three months to the day that I took my last PPI and see if I can continue to endure this or go back on the PPI. I will hate to admit defeat and be one of those who cannot live without PPI's. I guess the jury is still out, but it ain't looking good today after two days of nausea, hoarseness and mild heartburn. Feels like I am building up to something here.

    Rose

     
    Old 04-09-2010, 06:52 PM   #84
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    Re: Getting off PPI's and acid rebound

    I have just had two "decent" days again. I feel better and hopeful when I have one or two good days. I feel I get a reprieve or break. Then, I have a bad day and feel very frustrated. At least, I have not run back to the PPI yet. I'll keep reporting to see how it goes for the next week or so. I would love to be able to stabilize. I can live with mild heartburn even if it occurs daily, but it is the "attacks" that are hard to tolerate.

    Rose

     
    Old 04-10-2010, 06:24 PM   #85
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    Re: Getting off PPI's and acid rebound

    Another pretty decent day. Very light to minimal symptoms. Have been eating light with lots of salads, fruits, veggies and proteins like nuts, chicken and almond milk. Still taking 150 Zantac twice daily. I tried cutting down to 75 a week ago and that might be what sent me in the latest downward spiral so I increased the dose again to the 150 mg. If I can continue to experience days like this, I may be able to continue to manage with Zantac and lifestyle modifications and not go back to the Aciphex.

    I am still not sure to what extent my symptoms are due to acid rebound and what portion is caused by the disease (GERD) itself.

    Rose

     
    Old 04-11-2010, 07:03 AM   #86
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    Re: Getting off PPI's and acid rebound

    Quote:
    Originally Posted by rosebloom View Post
    Another pretty decent day. Very light to minimal symptoms. Have been eating light with lots of salads, fruits, veggies and proteins like nuts, chicken and almond milk. Still taking 150 Zantac twice daily. I tried cutting down to 75 a week ago and that might be what sent me in the latest downward spiral so I increased the dose again to the 150 mg. If I can continue to experience days like this, I may be able to continue to manage with Zantac and lifestyle modifications and not go back to the Aciphex.

    I am still not sure to what extent my symptoms are due to acid rebound and what portion is caused by the disease (GERD) itself.

    Rose
    Hi Rose. Haven't posted in a while. It's encouraging to see you have been having decent days but I feel for you when you have those horrible ones. If we could only know for sure that this is the rebound and this, too will pass. I wonder if the rebound takes longer than 3 months. It would be a shame to go back to Aciphex at 3 months because your symptoms are not completely gone. Do all the studies say 3 months? Or are they vague and say "several" months?

    As for me, I am on Aciphex every day. However, this morning I did not take one yet. I'm thinking about trying to supplement Zantac (2x day) every 3rd day to start.

    I was at my GP 2 weeks ago and asked him if it's possible to get off these PPI's. He said yes (although he didn't seem too enthusiastic about it....he's big on writing those scripts). Anyway, he said to substitute Alka Seltzer or seltzer water morning and night...but that's just another antacid. Uggh!

    I'm still staying away from those common trigger foods....not a coffee or alcohol drinker, no caffeine, chocolate, tomato, etc. My carbs are low and keeping my refined sugar to a minimum, if any.

    Keep up the good work.

    Last edited by Flyerfan; 04-11-2010 at 07:42 AM.

     
    Old 04-11-2010, 08:23 PM   #87
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    Re: Getting off PPI's and acid rebound

    Thank you for the words of encouragement. Lo and behold! I had another "good day" today. I took my Zantac and usual supplements and did not experience heartburn today. I am keeping my fingers crossed. I hope I can continue to "extend" these good spells. I think this is my third day without too many symptoms. I feel almost "normal." But I have gone through several good days before only to then experience heartburn all of the sudden for no apparent reason. Too early to tell if the good trend will continue.

    From what I have read, acid rebound can take up to three months and sometimes longer for some people. I don't think everyone reacts the same, but I suspect that the rebound has something to do with how effective the PPI's are at acid suppression for the particular person. My sense is that the more effective the acid suppression the worse the rebound when the person goes off the PPI. In my case, the Aciphex worked like a charm. In fact, half a pill worked great! I used to cut the pills in half and take 10 instead of 20 mg. I must say the Aciphex was wonderful for me until I discovered I had developed osteopenia after using it for only three years! That got me going on this quest to see if I can get off and stay off the PPI. I don't know what other side effects I might develop if I take it for the next twenty years or so. I am only 55 and I hope to live to a ripe old age (longevity runs in my family). I am really afraid of developing osteoporosis and ending up with a fracture that might have been preventable.

    This is why I made the decison to stick with the three month commitment to not take PPI's even if the symptoms keep recurring. I would hate to give up at two months if I am almost there in terms of working through the rebound effect. I know I have GERD and I am probably going to have to be on some type of medication and restricted diet for the rest of my life if I want to stay off PPI's. But I have done my homework and feel I am taking a calculated risk. We'll see what happens.

    The reason I want to continue this thread until I make a decision one way or the other regarding PPI use is that I have read many posts here where people get off PPI's and one never knows whether they stayed off or gave up and went back on them after a few days or weeks of suffering. I suspect people post when they are in distress and then forget to come back to post or give up posting on their progress when they decide to go back to their old medication.

    Maybe in the future someone will read through this thread and it will help him/her make a more informed decison regarding whether it is worth it for them to try to wean off PPI's or it is a futile attempt.

    I hope I succeed, but the jury is still out or whether I'll be able to stay off PPI's long term.

    Anyway, April 24th will be the date when I come to three months not taking PPI's.

    Rose

     
    Old 04-12-2010, 07:37 AM   #88
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    Re: Getting off PPI's and acid rebound

    Hello Rose,

    I wanted to thank you for your detailed posts and I do appreciate the fact that you are following this through until the end so that other members can find out the outcome after a period of time, rather than just at the beginning of their journey.

    I have been taking Nexium for almost 3 years, 40mg 1 x day. It worked very well for my heartburn. I had been thinking about trying to stop taking it as I don't like to take medicines indefinately if there is a way to treat otherwise. So I started googling about stopping Nexium and I could not believe some of the information I found. I had several side effects that I thought were a result of other issues. I suffered anxiety a few years ago and have that very much under control. However, I learned through that process that your body can react to stress and have physical symptoms. I thought that was what was happening to me until I read some of this information. I had one trip to the ER last summer due to swelling and of course, they came up with nothing.
    I also had not been supplementing with calcium.

    The side effects I have had over the past 18 months include:
    -tingling in hands and feet
    -extreme swelling in legs and ankles
    -muscle spasms
    -eye twitching
    -skin eruptions
    -joint pain
    -nerve damage

    I decided to stop the Nexium cold turkey (which I may not have done if I had read all of your information first). Today is day 21.

    I have been using Tums and have taken Zantac 150mg as needed. I have had raging heartburn at times, felt quite nautious, exhausted and some sour taste in the morning in my mouth. At this point in time, I would just like to feel better. Every day I feel I am walking on eggshells in terms of how I am going to feel.

    I am confident I made the right choice to come off the Nexium. I would also like to have 6 - 8 weeks of this under my belt before I discuss with my doctor (although I know he will say I should have discussed it with him first).

    How do you know if it is rebound or reflux? Are you having futher tests done?

    Thank you again for your commitment to this and I look forward to your continued progress.

     
    Old 04-12-2010, 09:38 AM   #89
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    Re: Getting off PPI's and acid rebound

    Quote:
    Originally Posted by LMF123 View Post
    Hello Rose,

    I wanted to thank you for your detailed posts and I do appreciate the fact that you are following this through until the end so that other members can find out the outcome after a period of time, rather than just at the beginning of their journey.

    I have been taking Nexium for almost 3 years, 40mg 1 x day. It worked very well for my heartburn. I had been thinking about trying to stop taking it as I don't like to take medicines indefinately if there is a way to treat otherwise. So I started googling about stopping Nexium and I could not believe some of the information I found. I had several side effects that I thought were a result of other issues. I suffered anxiety a few years ago and have that very much under control. However, I learned through that process that your body can react to stress and have physical symptoms. I thought that was what was happening to me until I read some of this information. I had one trip to the ER last summer due to swelling and of course, they came up with nothing.
    I also had not been supplementing with calcium.

    The side effects I have had over the past 18 months include:
    -tingling in hands and feet
    -extreme swelling in legs and ankles
    -muscle spasms
    -eye twitching
    -skin eruptions
    -joint pain
    -nerve damage

    I decided to stop the Nexium cold turkey (which I may not have done if I had read all of your information first). Today is day 21.

    I have been using Tums and have taken Zantac 150mg as needed. I have had raging heartburn at times, felt quite nautious, exhausted and some sour taste in the morning in my mouth. At this point in time, I would just like to feel better. Every day I feel I am walking on eggshells in terms of how I am going to feel.

    I am confident I made the right choice to come off the Nexium. I would also like to have 6 - 8 weeks of this under my belt before I discuss with my doctor (although I know he will say I should have discussed it with him first).

    How do you know if it is rebound or reflux? Are you having futher tests done?

    Thank you again for your commitment to this and I look forward to your continued progress.
    I, too am experiencing what I think are side effects of Aciphex. I have been taking it for 8 years. The beginning of this year I did my little "cold turkey experiment" and although it was bearable I felt like I may have been doing myself harm. So I went on Omeprazole (due to insurance wanting a cheaper alternative) and that didn't seem to work. Although, thinking back I think it did. Anyway, my GP got my insurance to fill the Aciphex and now I'm back on it. So I was off Aciphex for about 6 weeks and a week or two after I went back on it, I started getting these muscle spasms/cramps/twitches....whatever they are. They are mostly in my abdominal region however I have little spasms in my upper thigh at times. They are not constant and some days I really don't have them. Yesterday I took Zantac instead and didn't have them. I really didn't have them all the years I was on it but I did have headaches more. I am going to see a new Gastro and explain everything and hope I can beat this thing.

     
    Old 04-13-2010, 07:10 AM   #90
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    Re: Getting off PPI's and acid rebound

    Hi Flyer,

    What do you mean by you were afraid you were doing more harm than good?
    I am concerned that having heartburn every day is not good for me. I am just not sure how long I should give it to "settle down". I am not taking the Zantac every day. The last two days I have just used Tums as the heartburn occurs. The heartburn seems to come after anything I eat, despite what I eat.

    When is your GI appointment? I am still certain I am doing the right thing as when I look back at how many side effects I had, it is almost alarming. I just don't know what the alternative will be if the rebound doesn't settle down and I don't want to go onto PPI's.

    Have a great day.

     
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