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rosebloom 05-17-2010 11:31 AM

Getting off PPI's and Acid Rebound-What has worked for me- Four months later
 
I joined this forum in late January in desperation right after I made the decision to stop taking the Aciphex (a PPI) I had taken for three years to control heartburn and symptoms of acid reflux.

First, acid rebound is a very, very, very (and I want to emphasize the very) real phenomenon. I shudder when I think how misinformed many doctors still appear to be in spite of the mounting evidence that acid rebound can take months to work itself through. I was not a well informed consumer when I began to take Aciphex three years ago. I saw it as a miracle cure for my symptoms, and took my two physicians' word (the general practicioner and GI doctor) that it was a safe medication to take long term.

My decision to stop taking Aciphex was a personal one based on the discovery that I had developed severe osteopenia (the precursor of osteoporosis) in both hips after taking the Aciphex for only three years. My bone density had been well within normal range in 2007 as measured by a Dexa scan performed in the office of the same doctor who prescribed the Aciphex in the first place. I have now researched the literature and found research as far back as 2006 warning of the increased risk of hip and other fractures for individuals who take PPI's for more than three years.

By the way, my doctors' solution to the osteopenia problem was to start taking a Biphosphonate (Actonel, Boniva) and then double up on the Aciphex if the Actonel caused any GI side effects. Unlike three years ago, however, I did my reading this time and decided that was a route I did not want to take.

I am not encouraging people to stop taking their PPI's or other medications prescribed by their doctors. But I think it is important for all of us to do more independent research and become more informed consumers. For people like me who have decided to stop taking PPI's for one reason or another, my experience in trying to get off this medication may be helpful.

I took my last Aciphex pill on January 22nd and today is May 17th. Up until about a month ago, I was not confident that I could stay off the Aciphex long term. I am now beginning to feel like I can. I think it is safe to say that my acid rebound lasted approximately three months or a little bit over. I experienced fairly severe rebound, and I was one of those people who felt for a long time I had to be dependent forever on a PPI or some form of acid suppressing medication. I had daily episodes of heartburn and other symptoms that far surpasssed anything I had experienced before I began to take the Aciphex. My stomach was bloated. I became constipated, experienced horrible gas and pains on top of my stomach and then there was the relentless heartburn. I substituted the Aciphex with Zantac 150mg twice per day which I took round the clock until about a week ago. But my rebound was fairly severe. I was miserable with one GI symptom or another.

I tried many different remedies and supplements along the way to ease my discomfort. I tried two rounds of orange peel extract or D-Limonene at $30.00 a pop (one takes one capsule every other day for twenty days). That did not seem to help at the time I tried the treatments. It did not seem to hurt either.

What has worked for me are the following:

1) Taking calcium/magnesium/vitamin D3 supplements. I take mine in liquid form for easier absorption and because I read somewhere (I wish I could recall the source now) that calcium in liquid form is more easily absorbed and also has a strengthening effect on the LES. I don't know if this is true or not but, since I have to take these supplements anyway, it does not bother me to take them in liquid form. I found a supplement that contains all three which I purchase at a local healthfood store. I take two tablespoons a day. I also take other supplements in pill form such as fish oil, probiotics, B12 and a multivitamin. I am also taking fiber supplements to keep me regular.

2) Believe it or not, the old Apple Cider Vinegar remedy has worked for me. I remember trying apple cider vinegar three years ago and being horrified by the taste (I diluted it in cold water back then). Besides, if the doctors provided me with a newer, improved, scientific, safe medication, why would I not go for that instead of some old wives' tale? Another poster here reminded me about ACV about two weeks ago, and suggested I try it again. I began taking ACV about a week and a half ago three times a day. I now take it twice a day (morning and night). I take two tablespoons diluted in a glass of water at room temperature and I sip the mixture through a straw. It definitely has helped my heartburn. I am still not sure how it works. I have read the whole thing about the acetic acid and other nutrients in ACV. I don't know if that is the mechanism of action or if it is a placebo effect, but taking ACV twice a day has coincided with my ability to stop taking Zantac daily round the clock. I have taken one Zantac over the past ten days which is fewer than the two I required daily until I started the ACV.

3) DGL and aloe vera juice definitely helped me when my esophagus was red and inflamed. I have cut back on the DGL now and suck on one here and there through the day. I am no longer taking aloe vera juice daily, but would have no problem using it again if my esophagus becomes irritated by gastric acid. I have also purchased slippery elm lozenges and an antiacid called Briosch (both online from Amazon) and use them sparingly as needed. The Briosch is pure bicarbonate of soda in a lemmony fizzy drink that is very pleasant to drink. It's like Alka Seltzer but without the aspirin.

4) I have cut out caffeine, particularly coffee, alcoholic drinks, dairy and many carbohydrates. I now drink almond milk and coconut juice (both agree with me). I can drink certain decaffeinated teas, like decaf green tea. I cannot have raw peppers or tomato based red sauces. However, I can eat fresh tomatoes in a salad if I don't consume too much. It seems like all in moderation. I eat earlier and less. I eat more small quantities throughout the day as opposed to big meals. I am not overweight. I do not smoke and was not a heavy drinker before reflux hit me three years ago. I think the cause of mine is probably a combination of middle age, menopause, changing hormones, etc.

I think I have outlined all my "secrets." I want to emphasize in closing that different remedies will work differently for different people. Some people may need to stay on PPI's forever. Others may need to take them periodically and others may not need to take them at all. It worries me that we don't even need to go see a doctor anymore before we can grab that PPI prescription at the drugstore.

I also worry that many people who experience rebound mistake it for the disease and run back to the PPI after a week because they find the symptoms of acid rebound unbearable. Acid rebound is real and it can last several months before gastrin (hormone) levels in the blood normalize and the proton pump cells stop dumping so much acid into our stomachs. Therefore, read up and be prepared in the event you choose to go off PPI's. Sadly, do not expect a lot of support from your doctors if you want to get off this type of medication. I received the silent treatment when I discussed this with my family doctor in January and she then mailed me a prescription of Aciphex and Actonel along with my lab results "just in case."

I am glad to report I am no longer taking Aciphex, Zantac or any other acid suppressing drugs and have by now experienced days at a time with few or little symptoms.

Here is wishing everyone well.

Rose

marigoldgirl81 05-17-2010 08:51 PM

Re: Getting off PPI's and Acid Rebound-What has worked for me- Four months later
 
Thanks Rose, wishing you well on your journey! You are going to be sooooo much better off without ppi's, good for you for making lifestyle changes :)

rose4me 05-17-2010 09:55 PM

Re: Getting off PPI's and Acid Rebound-What has worked for me- Four months later
 
Hello Rosebloom - I was thinking about you today - wondering how you are progressing and here you are. I am thankful I came across the raw apple cider vinegar info, it has helped me so very much. I am on my second bottle, as with any thing, there are setbacks - life provides so many diversions and even roadblocks - and still I plod forward. I for one appreciate your candid and open approach to regaining what was lost to you.
I wish you peace, joy and contentment and wisdom to see the imposters.
Rose

laconstantine 05-18-2010 04:35 AM

Re: Getting off PPI's and Acid Rebound-What has worked for me- Four months later
 
Rose you are a strong woman!!
You insipre me to drop PPI and Im sure over people too.

How is the calcium absorption, has it improved??
And the symptoms how do you think is it possible to be GERD free in few years?

rosebloom 05-18-2010 10:25 AM

Re: Getting off PPI's and Acid Rebound-What has worked for me- Four months later
 
[QUOTE=laconstantine;4248145]Rose you are a strong woman!!
You insipre me to drop PPI and Im sure over people too.

How is the calcium absorption, has it improved??
And the symptoms how do you think is it possible to be GERD free in few years?[/QUOTE]

Thank you all for your support and replies.

As for the ACV, I think the first time I tried it, I took it with cold water and it tasted awful. Then, the PPI offer came about, and taking one little pill once a day was oh so tempting and hard to pass up. I did not need anything else as long as I took the Aciphex. But using ACV has helped me this time around. I took it three times per day the first week and I am now taking two times per day. It is not a big deal nor does it taste bad when you take it with tepid or room temperature water. Other people have also written about taking it with juice and honey, but I don't even need to do that. It is very easy for me to just throw the two tablespoons in a glass of water and drink it through a straw. I wish I understood how and why it works so I could pass that information along, but it is definitely helping to balance things down there.

I don't think the ACV would work if I had not also made drastic lifestyle changes. I had some decaf coffee today with breakfast and seem to have done OK. I have no discomfort and it is a bit past one right now. But I don't drink regular coffee daily on an empty stomach and really look into what I put into my mouth. I count my carbs and try to stay below fifty or sixty carbs per day. Some low carb diets go as low as 20 carb units per day, but I can't do that. That would amount to a piece of toast or a glass of milk.

As for the calcium absorption, time will tell. I will not have another Dexa scan until early next year. I am hoping I can stay at the same level or improve. I will not take Boniva or Actonel to treat the osteopenia. I don't know if it can be reversed or not. I am now taking calcium citrate and vitamin D3 along with magnesium and hope that combination is more easily absorbed and used by my body. I am also taking it, as I have written before, in liquid form.

It seems like it is possible to get off PPI's, but it is a long process and it takes months, not days or weeks to go through rebound. Therefore, others may give up too quickly if not informed of how the process unfolds and how long it takes.

I don't want to be down on PPI's. They are wonderful and effective drugs, but I am convinced they are not supposed to be for long term use. Doctors also need to tell their patients of the potential side effects and rebound phenomenon so that patients can make a more informed decision regarding whether or not the symptoms are "worth" the remedy and its potential side effects.

Ultimately, I have to take responsibility for not having informed myself better before I started to take the Aciphex. It is a mistake I will never again make unless I am incapacitated and unable to read up on a medication before I take it.

Being off a PPI, as Rose4Me writes, is not perfect. We have to be ready and prepared for good and not so good days. I had mild heartburn yesterday which I treated with a little Briosch (bicarbonate of soda) and water and then went on to have a pretty decent rest of the day. That is what I now consider a pretty good day.

I don't think my GERD is curable. In my case, it is a chronic condition that will need to be monitored and treated one way or another for the rest of my life. I am OK with that as long as I am not creating more potential health problems with medicines I am using to treat it (unless, of course, I absolutely have to).

Laconstantine: Don't worry too much about getting off your PPI too quickly. You are very young and I am sure you will at some point. Make sure all your symptoms have been resolved first as much as possible, and then you can talk to your doctor about very slowly weaning yourself off. Be prepared for rebound and how to deal with it. Talk to your doctors and nicely educate them.

Rose

Flyerfan 05-18-2010 04:34 PM

Re: Getting off PPI's and Acid Rebound-What has worked for me- Four months later
 
Good to see your progress, Rose. I am now hopeful. I'm planning on seeing a Naturopathic Doctor to get her take on all this now that I have my EGD results and everything is all normal. He did however biopsy for H Pylori but I had a blood test for that which came back negative so I'm not expecting anything there. But ya never know.

As far as the ACV....I'm no doctor but I've done my share of research. A normal LES is supposed to open only for food and burping. I've read that when it senses stomach acid, it remains closed. Maybe that is how and why the ACV works. Just a theory. I'd like to try that myself but it makes no sense while I'm still on the meds.

Here's hoping you continue to feel good.

LMF123 05-18-2010 06:01 PM

Re: Getting off PPI's and Acid Rebound-What has worked for me- Four months later
 
Hello Rose,

I just wanted to thank you again for your insight and taking the time to document your journey. Your suggestions and words of encouragement have really helped me with my own situation. And you right...so many people start off here in desperation and then we don't hear the end result. More than anything, I am glad to hear you are feeling so much better. I wish you peace and good health! Be sure to drop in once in a while.....hopefully I will also have a positive end result.

Be well.

rosebloom 05-18-2010 08:40 PM

Re: Getting off PPI's and Acid Rebound-What has worked for me- Four months later
 
[QUOTE=Flyerfan;4248598]Good to see your progress, Rose. I am now hopeful. I'm planning on seeing a Naturopathic Doctor to get her take on all this now that I have my EGD results and everything is all normal. He did however biopsy for H Pylori but I had a blood test for that which came back negative so I'm not expecting anything there. But ya never know.

As far as the ACV....I'm no doctor but I've done my share of research. A normal LES is supposed to open only for food and burping. I've read that when it senses stomach acid, it remains closed. Maybe that is how and why the ACV works. Just a theory. I'd like to try that myself but it makes no sense while I'm still on the meds.

Here's hoping you continue to feel good.[/QUOTE]

I would love to hear what the naturopathic doctor recommends and if he/she has a theory of how or why ACV might help.

I started taking the ACV while on the Zantac (not on the PPI) and after a few days of overlapping both treatments decided to stop the Zantac and see what happened to me. I started on a weekend with only ACV to make sure I was home in case I was having a really bad day.

Maybe, as you say, the ACV signals the LES to close due to its acid content.
I am fairly comfortable with the ACV as four tablespoons a day diluted in water is not more than I would be consuming if I were to be putting the vinegar directly on my salad twice a day. It is worth a try. I have to admit that, of all the treatments I have tried, it is the one that took me the longest to work up my nerve to try. I was horrified thinking that taking the ACV would immediately produce horrible heartburn. Quite the opposite happened.I would love to know more about ACV. I have read both positive and negative things about it, but it seems to really be helping me. Maybe I am one of those with the low stomach acid. Go figure!

Rose

Rose

rosebloom 05-24-2010 12:49 PM

Re: Getting off PPI's and Acid Rebound-What has worked for me- Four months later
 
It is now 5-24-10 and I continue to be heartburn free with the diet modifications, the use of supplements, DGL, ACV, and simply being very careful of what I put in my mouth. I doubt that I am going to remain heartburn free forever. I know this tends to be a recurrent symptom, but it now looks like I am on the other side of rebound and able to not take medications to control symptoms. I never thought I would be able to write this back in January when I started this journey. To everyone else out there who is struggling with reflux or trying to come off a PPI, I think it is possible in some cases and with great care to remain medication free with tolerable to no symptoms. It does require work and discipline and it is a trial and error process.

There is no miracle cure and probably no cure, but a series of lifestyle changes that make living with this disorder more tolerable, even without the use of PPI's.

Rose

kicay 06-02-2010 09:58 PM

Re: Getting off PPI's and Acid Rebound-What has worked for me- Four months later
 
Rosebloom, I stopped taking Prilosec since I know there is more serious side effect if taken too long. I only took it when I had palpitation and anxiety attacks and when I got pregnant. Now, I check what I eat and sleep with many pillows under my head. I still eat chocolates and pasta occasionally.I also use apple cider vinegar but mix it on my dishes. I tried taking it with water, though it worked for me but I got geographic tongue after.I have not resume my mg/ca/zinc tablet and the probiotics and aloe vera stuffs because I'm still breastfeeding. And speaking of breastfeeding, everytime my baby use my left breast, I can feel those nerves to my stomach and esophagus and gives me relief. I heard there are some researches that breastfeeding can benefit the mom as well and cure those underlying diseases esp prevents you from breast cancer. By the way, I have GERD, silent reflux, used to have left upper back pain and neck pain.

ladybuglove 06-03-2010 10:47 AM

Re: Getting off PPI's and Acid Rebound-What has worked for me- Four months later
 
Just wanted to wish you all luck on your journey off PPI's. I was never on them but I had a severe chronic case of atrophic gastriits and went 2 years and looks like Im toward healing with very little mild gastriits left so dont be afraid to go herbal and diet, I basically went vegetarian and herbal. To finish up the final stage of my inflammation I will be on PPI but only for 3mths.. then after I shall continue to herbal and veggie based lifestyle..and I believe I have nipped my acid in the bum! So much in the bum that I had an orange without one burp or pain, and felt great. But just wanted to give you all some hope that it is possible to get better with nutrition and herbal. If anyone needs a list of my herbal cocktail I used and will continue after my PPI treatment let me know, but remember it works best with a veggie based lifestyle that means no meat or little fish or skinless chicken or turkey will be fine...if you can handle being a bland eater this may work for you, cause it involves no spices or seasonings except fresh or good herb based types on your foods no gravys no sauces no condiments no proccessed boxes or cans its truly eating veggie fruits and good grains with soy no dairy no eggs with little meat source with ur daily herbal cocktail and vitamin sources! You also have to be willing to exercise. So its tough program given to me by a gastro doc in India but did work!

rosebloom 06-03-2010 04:03 PM

Re: Getting off PPI's and Acid Rebound-What has worked for me- Four months later
 
[QUOTE=ladybuglove;4258619]Just wanted to wish you all luck on your journey off PPI's. I was never on them but I had a severe chronic case of atrophic gastriits and went 2 years and looks like Im toward healing with very little mild gastriits left so dont be afraid to go herbal and diet, I basically went vegetarian and herbal. To finish up the final stage of my inflammation I will be on PPI but only for 3mths.. then after I shall continue to herbal and veggie based lifestyle..and I believe I have nipped my acid in the bum! So much in the bum that I had an orange without one burp or pain, and felt great. But just wanted to give you all some hope that it is possible to get better with nutrition and herbal. If anyone needs a list of my herbal cocktail I used and will continue after my PPI treatment let me know, but remember it works best with a veggie based lifestyle that means no meat or little fish or skinless chicken or turkey will be fine...if you can handle being a bland eater this may work for you, cause it involves no spices or seasonings except fresh or good herb based types on your foods no gravys no sauces no condiments no proccessed boxes or cans its truly eating veggie fruits and good grains with soy no dairy no eggs with little meat source with ur daily herbal cocktail and vitamin sources! You also have to be willing to exercise. So its tough program given to me by a gastro doc in India but did work![/QUOTE]

I would love to hear about the supplements you take in addition to your modified diet. I have learned about magnesium, apple cider vinegar, DGL and other supplements I take through this board.

Rose

rosebloom 06-07-2010 10:39 AM

Re: Getting off PPI's and Acid Rebound-What has worked for me- Four months later
 
Still fairly symptom free with the aid of ACV, chewing gum, my supplements and, by now, periodic use of DGL. I chew sugarless gum after meals which I think greatly helps my digestion and still eat fairly early and no later than 6:00 P.M. or so.

I have not used any Zantac or "rescue" medication for over three weeks now.

Rose

Flyerfan 06-07-2010 05:26 PM

Re: Getting off PPI's and Acid Rebound-What has worked for me- Four months later
 
COOL!! :cool:

Great to hear you're still doing well. Just started my journey down the path to being PPI-Free since I got a clear EGD result a few weeks back. I'm weaning off the Aciphex slowly. I came up with my own plan. I went from one 20mg every 24 hrs to one every 36 hrs for the past week and probably for another week. Then, go to one every other day and so on. I have to see how it goes. I don't want to split the pills because they are enteric coated and you're not supposed to split them....I don't want to irritate my stomach. I am using DGL which works pretty good. I bought the ACV (Braggs pure and unfiltered organic) but haven't used it yet. My carbs (complex) are at a bare minimum and my sugar intake (not counting fruits) is almost non-existent (except for honey).

I do plan on starting a thread on my progress so far but I'd like to wait a week or two and see how it goes first.

Keep up the good work!

rosebloom 06-07-2010 10:16 PM

Re: Getting off PPI's and Acid Rebound-What has worked for me- Four months later
 
Flyerfan:

Sounds like you are doing great and following a very sensible plan. I am so glad to read others like you are trying and doing well on their plans to come off PPI's. We are proving that it can be done. Let me know how it goes with the ACV. Maybe you can try one tablespoon in water rather than two at first. Others have written here that they mix they ACV with fruit juice and that works well too.

I had a delicious scone for breakfast today and actually ended up experiencing heartburn on and off the rest of the day. It was not unbearable but a bit uncomfortable. I think that thing must have had a lot of carbs and sugar. I am now getting to where I can predict what the triggers might be and can take calculated risks like today. It was a delicious cranberry/orange scone from Starbucks. Otherwise, I am being pretty good.

I am back to my almond milk and wholegrain toast for breakfast tomorrow. A little cheating here and there inspires me to be good the majority of the time.

Rose


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