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

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I had my scope done two years ago and it was "normal" other than some minor irritation and reflux. I did not have suspicious or pre-cancerous cells, Barrett's esophagus or H-Pylory. I think these were the potential problems they were looking at/for.

Rose
 
Well, after two miserable days, I have had a pretty decent day today. Nothing like a heartburn-free day to lift my spirits again. I'll keep at it with my ACV, DGL and calcium/magnesium supplements and trying to avoid the known triggers. I can put up with the periodic heartburn if at least I know it will not be a daily thing. I did not take Zantac today. I guess I will save it for those bad days and take it as needed.

Thank you for checking in and your worRAB of encouragement.

Rose
 
Hi Rose,

Thank you for posting your update. I too have been struggling of late. I will update my thread shortly. I am glad to hear you had a better day today. It really is a challenge to get through and it affects so much of our every day lives. I hope that you find a way to manage without the PPI's. It is very tempting to resort back to them. Please keep us posted and I am wishing you well and good health.
 
For those of you who have come off the PPI's, have you experienced a lot of gas or gas pains?

I'm actually going for an abd. ultrasound Monday just to make sure it's nothing else. I am either getting excessive gas or I'm getting normal gas and not passing it. I know when your stomach is producing more acid you can get gas. Tomorrow it will be 2 months since my last PPI :). Lately when my stress level is up, that's what happens. I can worry about any little thing and right now it's my vacation coming up in one week. I'm really trying to stay away from any food that is gassy and I'm not eating an enormous amount of fiber so I think it's the stress causing it because I can feel more reflux at that time, too. My ND said it's not uncommon to experience GI distress as that is the area we are working on. Still, it's very unsettling when you can't pass it and it hurts.
 
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 meRAB.

Here's hoping you continue to feel good.
 
Hello Rose,

I just wanted to thank you again for your insight and taking the time to document your journey. Your suggestions and worRAB 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.
 
Thanks for the info. I had an endoscope 2 years ago due to burning in my chest and there was a raw spot. I drank some Carafate? and took ppi's to get rid of it but then everytime I stopped the ppi, I got bad burning in my throat (which had never had before the ppi). When I learned that ppi's can lead to osteoporosis, I quit cold turkey. That was 10 weeks ago and I know the "rebound" can last 3 months or so. The past 10 days have been better as I am really watching what I eat, sleeping on a wedge pillow, and taking Gaviscon before bed. I have a colonoscopy in Noveraber so will talk to my gastro doctor then.
 
Everything is going okay except the 3mth nexium ordeal I'm not digging its causing a lot of pain and side effects for me. So I think its back to the herbal cocktail I mean if i got from atrophic down to mild .. maybe the herbal cocktail will continue to reduce it all the way to zero. I will post a thread up the full treatment for hpolyri (although I posted this treatment on a hpolyri thread a while back-my very famous blog journal entry on a treatment used that received great massive amounts of positive comments and success) all the way down to the herbal cocktail for acid and inflammation that I used and use (gastriits and Gerd) for everyone as soon as I get the chance .. and free from work :)
 
Hi Rose

Thanks for your very informative report. I just figured out that the Aciphex I have been on for 2 years is causing me severe muscle and joint pain. I tried to stop once and the heartburn was horrible. Now that I know that it is most likely rebound I am goihg to try your suggestions. You may not even post anymore on this topic but if you do - please let me know if you are still going strong.

Sincerely,
Sharenlee
 
Jayner:

Hang in there. In spite of all the harRABhip, it is worth to have the endoscopy/colonoscopy. That prep for the colonoscopy is awful, though. But it is worth for the peace of mind you can have by knowing things are under control and you don't have anything serious going on.

I think for me the key has been to take control of this "thing" by trial and error and trying to educate myself better. You will eventually find triggers and what works for you in terms of remedies.

I still experience some heartburn several times per week, but not daily and not constant anymore as when I was going through the rebound. It's a slow and gradual process, but I can now identify triggers and have entire "good days" with few or no gastric symptoms. I think most of us can get there with hard work and patience.

Rose
 
I just got off my PPI for a week now, because I am having severe burning due to my gastritis and it wasnt working one bit 3 mths into my PPI still same pain. Ive been using slippery elm DGL aloevera and such so far not to much relief with any of this.
 
I have not experienced much gas with coming off the PPI. Since I have really been watching what I eat, I actually have less gas than ever. Good luck with the ultrasound.
 
I am now on month five off PPI's and feel I have reached a plateau where I am going to be, at least for now. Symptoms are now manageable and somewhat predictable. I had another scone the other day (packed with carbs and sugar) and ended up with heartburn pretty much all day. I feel more relaxed about living with this condition now, and have accepted that it will be better for me to live with mild symptoms rather than no symptoms and pay the price of developing some undesirable side effect down the line. I am here to write that I survived acid rebound and there is light on the other side. However, I am by no means symptom free even with all the remedies I use and care I take to keep this condition under control (minus the occasional scone or cup of coffee).

But I have to reiterate that I never experienced anything as bad as that acid rebound coming off the PPI's for the first two months or so. Third month was more tolerable and then things sort of evened out which is where I have been for the past month and a half or so.

Definitely doable if one has enough information and is willing to wait the darn rebound out.

Rose
 
This doesnt sound right, I've never heard of tightness like this. If its GERD I'd think you would have a lot more burning going on. Maybe you do have GERD but another condition on top of it. Honestly I dont think a PPI is going to help this condition unless its truly just GERD, can you go check to see if your thyroid is enlarged? Other possibilities besides Gerd can be allergies like pollen can tighten the throat, throat disorders and disease- can you have someone go in and xray to look in your throat, anxiety and stress. You might want to have your sphinctre looked at too, could be some surgery you could do to rid this problem, I don't see I guess how a PPI can control the tightness maybe the acid but tightness that's not it's job. If the PPI didn't work before the zantac is not going to work either, something could be off here did you have a endoscopy that truly said you had GERD, they didn't mention other possibilities? How much time has it been since your endoscopy, maybe something new has come about now? some questions for you to ponder.

By the way everyone I'm still going really well PPI free, my acid reflux is calm I've only refluxed once in many months, but my fault I had a piece of cake, now thats IT!! I am following a Herb Routine that consist of 6 herbs- Acid Gone ( I ordered this online), DGL, Aloe Vera, Slippery Elm (I have to open cap and drink it 3 times a day), Triphala ( I ordered this one online), and Ginger, also taking digestive enzymes it seems to help break down food so I don't reflux it back, and VSL#3 probiotics just to keep some friendly bacteria around, with an alkaline diet, I also use PH strips to track my levels, no problems thus far! I do take cal/mag as well. hope for more acid free days.
 
How many Mg are you taking. I tried 6mg and I was so tired in the morning. I tried 3mg it was better but I still felt drowsy. They say 5mg is what you need to make for 3 months for it to work.


Gaviscon Advance 10ml is what is working for me. You can only get in from the UK. I still taking Nexium think this will help me get off. My throat is healing with the Gaviscon. I still get tightness but its getting less intense. Been on Gaviscon for 12 days now.
 
Wow nice! good for you there.

I'm also now PPI free and doing well using
Bastyr Formula B, Aloe Vera 2 X a day, digestive enzyme- I don't use the one with HCI (I dont think I have low acid) 3 X a week (you dont want to over use enzymes then your stomach will stop making them and rely on the enzyme-this was a doctor warning to me), VSL#3 probiotic, cal/mag, and Ulcetrol by Now FooRAB. And my gastritis and acid reflux is looking better these days. Of course eating a healthy diet!
 
I buy a liquid form of calcium/magnesium/D3 suspension that you can buy at the local healthfood store. The one I take is made by Bluebonnet and comes in different flavors. It is like taking a tablespoon of yogurt. I guess I can't list the name of the store or it will be deleted. I take two tablespoons a day and it supposedly has the required daily dose of these supplements. There are other branRAB. This happens to taste decent to me.

The vinegar I buy is Braggs and I think you can also buy it at the local healthfood store. I have read here that it does not have to be this type of vinegar to treat heartburn. Apparently what helps neutralize or raise the PH of the excess hydrochloric acid in the stomach is the acetic acid in the vinegar. Apple cider vinegar has other nutrients that may be good for you, so maybe it is better to take the ACV for general health purposes, but you can probably take any other vinegar with similar results.

I still have good days and bad days no matter what I do. I still have to take a Zantac here and there or my stomach will burn and bother me for hours.

Hope this information helps.

Rose
 
Have any of you experienced tightness in your throat? I have it for 3 months and I cant get rid of it.
 
I decided to start this new thread as I think it is time for me to start winding down on my participation on this forum. People here have been incredibly gracious and supportive of me, and I have tried to reciprocate as much as time allowed. 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 rounRAB 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 remeraber 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 corabination 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
 
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