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Acid Reflux / GERD Message Board


Acid Reflux / GERD Board Index


Rosebloom- I have been reading all of your posts. I was hoping to read that you had success in managing your GERD without going back to PPIs. Sounds like youíre hanging in there so far. I have been dealing with GERD for about 5 years, and have been on PPIs for much of that time. I started to feel better, and had a scope that showed my eroded esophagus had healed. So, I went off my Protonix (40 mg 1x day). I was doing ok for a few months with just taking Tums, with some days better than others. For a few weeks at a time, I would feel the need to make myself throw up just to get rid of that stuffed, bloated feeling. Also, I developed a lot of trouble swallowing. I was going to go back to the doctor after the holidays, but right around Christmas I had what felt like a heart attack. I have been in and out of the hospital with shortness of breath, chest pain, and trouble swallowing. All the tests were normal. Everyone was trying to tell me that it was simply anxiety, and gave me Ativan (who wouldnít be anxious when they feel like theyíre choking on their food??). However, I did have another EGD that showed mild gastritis and esophagitis. I also had the manometry test done that showed mild peristaltic weakness. Through this all, I have been suffering terrible reflux. I eat small, mild meals, eat at least 3-4 hours before going to bed, but have worse symptoms now than when I was off meds, and eating bad foods late at night. I canít help but wonder if my few months off PPIs somehow made my condition worse. I am currently on Prevacid 30 mg 1 x day, but it is not helping at all. Iím afraid my doctor is going to tell me to increase my meds, but I do not want to take more. I am so afraid of what these PPIs are doing to my body. I just turned 46 and am premenopausal. I think that with my weak LES, my situation is helpless Ė I do not want to have nay kind of surgery. I have cut back on the Ativan Ė those types of meds are supposed to make GERD worse, so it makes no sense to me why I would be prescribed that! I share your frustration and concerns and feel like none of the doctors are addressing my concerns over the PPIs. I will definitely get the Dexa test done, though having been through so many x-rays while in and out of the hospital, I donít relish the idea of subjecting myself to more x-rays. Iíll also increase my calcium and vitamin D. I hope that you post again and share how youíre doing.
[QUOTE=TVC15;4199237]I started taking powdered AsorbAid after meals about one day ago and immediately felt better. This morning, I took the AbsorbAid after a light breakfast, then took calcium & magnesium powder. Now I have bad indigestion & heartburn. My breakfast was bland, so I know itís not the food. And since I took the AbsorbAid with other meals, I know itís not that. Has anyone experienced heartburn from a calcium/magnesium combination?[/QUOTE]

Hi TVC:

I have noticed that I have to be careful when I take any supplements (vitamins, calcium, fish oil, etc) because they will irritate my stomach if I don't take them with actual solid food.

I usually split my calcium supplements into two daily doses and I had been taking the morning one with yogurt. I noticed that I was developing stomach ache and some heartburn even though I was also taking an H2 blocker in the morning. Therefore, I have now switched that first dose to lunch or eat a bit more in the morning if I take my pills in the morning. I have not had heartburn if I take the vitamins with a heftier meal, i.e., lunch or dinner.

So it is possible supplements may be irritating a stomach (or rather esophagus) that is already irritated by reflux.

You mentioned your breakfast was bland. It may have not had enough substance in it or perhaps even a little fat to buffer those supplements.

On a separate note, I have to tell you that I have good days and bad days that appear to have nothing to do with what I do or don't do or take or don't take. I practically eat the same thing every morning and lunch and I can have heartburn and discomfort some days and not others. It is frustrating for sure. I eat bananas, yougurt, cantaloupe, crackers, rice pudding, a small sandwich, almond milk, green tea with honey and that type of thing during my typical day. I eat throughout the day and eat small portions of the foods I mentioned. I also drink plenty of water, etc.

I always worry about dinner time because that is when I have time to have my heaviest and heftiest meal (If I am going to have meat or something like that it will be in the evening) and I rarely get heartburn after dinner. I do eat early and don't eat large quantities of anything. That is what is so frustrating about this GERD business. I am also fortunate to not have reflux at night when I sleep. My stomach seems to go to sleep when I go to sleep.

On another subject. This is the beginning of my seventh week off PPI's. I started this post a few weeks back when I decided to go off Aciphex. At first, I did not know what the heck I was doing or what to expect and, honestly, I did not think I could last two days off the Aciphex. I did not get much support from my family doctor who suggested I try Pepcid as a substitute, but said good luck and gave me another prescription for Aciphex anyway.

I don't get severe hearburn every day now, but still have it every two to three days and probably have some mild heartburn, stomach pain and discomfort at least once a day. Chewing a lot of gum after dinner seems to help get that food down and digested, and the heartburn away.

I recently decided to switch from Zantac 150 mg twice a day to Pepcid 10 mg twice per day. I have been told Pepcid is a newer H2 blocker and lasts a bit longer. I have been taking Pepcid for two days and, if it does not work better after a week or so, I may then go back to Zantac. I am trying to stay off the PPI.

From what I have been reading, acid rebound from PPIs can last up to three months and longer. Gastrin levels (hormone that helps produce acid) apparently rise in the blood as a result of the acid suppression caused by the PPI use. Gastrin levels in one's blood then have to go down and level off upon PPI discontinuation, and then all those extra proton pump cells that were created by the excess Gastrin have to die off. Therefore, it is not a one to two week deal apparently. My sense is that one's stomach has to be sort of reprogrammed after the cessation of the PPI's, and that change may take a long time. We truly become dependent on those medications.

I have been reading a lot on the subject and learning a lot even from finding medical journal abstracts online because I have not been able to get a straight answer from any of my doctors. Nobody really knows for sure and nobody was too supportive of my idea to go off the PPI.

At this point, I don't know what part of my symptoms are due to PPI rebound and what part to the disorder (GERD) that led me to take PPI's in the first place. Unless I stick it out and stay off those PPI's longer, though, I am not going to ever find out.

Therefore, I am still off PPI's, trying to be very disciplined with food, taking my supplements and now Pepcid and watching how things develop.

TVC: I'll look into AbsorbAid to see if that is something that might help me. I started taking Align at another poster's suggestion and that seems to be helping with the gas and bloating, if not the heartburn.

Thank you everyone for posting your experiences and suggestions.

Rose
Hi Sharon:

As far as the Aciphex, I don't know if they make more than one type of tablet. Mine were 20 mg, round and small, and I had no trouble cutting them in half with one of those pill guillotines you can buy at the pharmacy. I never knew they were enteric coated or that they could not be split (Then again, aspirin is enteric coated and I have to trouble splitting one in half and taking a half if I need to).The half dose (10 mg) worked very well. It was actually when I started to cut that half in half that I began to experience symptoms. I guess 5 mg is not enough to suppress acid. I actually told my family doctor that I was splitting the 20 mg pills in half and she said "OK." Maybe she does not know any better. But split them I did, and they still seemed to work pretty well while I was using the halves (10 mg).

The reason I refer to going back to a baseline is that I have been through seven weeks of pretty severe symptoms, but have begun to feel almost "normal" on the Zantac now that I am at the beginning of my eighth week off Aciphex. Before, I was feeling pretty crappy even on two 150 mg daily doses of Zantac.

I don't take DGL all the time. I only take it when my throat feels raw, which has not occurred for three or four days. I don't find it very pleasant and it makes everything I eat taste like it. But there were a few weeks there when I was sucking on those pills three or four times per day. I was also taking teaspoons of honey to soothe my throat and esophagus and drinking the aloe juice. I have cut back on most of that by now that the Zantac and low carbs seem to finally be doing the trick. It is hard to remember to take all that stuff unless you feel miserable. I also had to be careful not to drink too much aloe juice as it gave me stomach cramps and diahrrea. A little aloe went a long ways for me.

In my particular case, and assuming that my rebound symptoms have now begun to finally subside, it has taken almost two entire months for me to go for three entire days without experiencing heartburn or some other gastric symptom. I took my last Aciphex on January 20th or so.

When I first got off the Aciphex, not only did I experience horrible heartburn, but I also began to experience symptoms I never had before the PPI's. These included: stomach pain, bloating, feeling of pain on the pit of my stomach, gas, and general indigestion. I have not experienced heartburn or indigestion for three entire glorious days, and I am being very careful to keep those carbs down and still stay off coffee, onions and other irritants. I love my coffee and love bread, rice, potatoes and all that good starchy stuff. But I'll stay away from them if I can manage my symptoms and stay off PPI's for good.

If I can continue to maintain my present functioning and have decent days like the past few days, then I have finally begun to turn the corner. But I don't want to declare victory too soon.

I think the low carbs are helping. I also think the orange peel extract is helping (or at least not hurting). I guess the trick is to keep that esophagus and throat coated and minimize the damage as much as possible as we are going through rebound. I took quite a bit of Gaviscon during the first couple of weeks. Rather than allow the heartburn to go on, I would take a tablespoon of liquid Gaviscon and start to feel better after ten minutes or so.

I was very discouraged many, many days. There were days when I felt I was doing better, but others I felt I was going backwards. Three days forward, four days backward. I am going on spring break for a few days and hope I can hold on to my healthy diet and not give in to too much temptation. I am taking the DGL along just in case. Too bad I can't take a bottle of aloe juice on the plane.

The one thing I would do differently if I had to do it all over again is to get off the Aciphex more slowly. I cut the pills in half for a week, then cut those halves in halves for a few days and, in about two weeks, I had stopped taking it completely and started the Zantac. I might do as you suggest to start alternating one day on Aciphex and the next on Zantac. Then, maybe one day of Aciphex, and two on Zantac and so on until you are taking more days of Zantac and less Aciphex. There has to be an easier way than the way I went about it.

My goal at the beginning was to stay off Aciphex for at least three months to see if I could work through the rebound and get to a level where I could keep my symptoms manageable. Maybe I am there or maybe not. GERD is a fickle disorder. I'll report when I get back from spring break.

Congratulations on your weight loss and hard work. I am sure they'll pay off health-wise.

Rose
I am still off the Aciphex and only on Zantac twice a day plus the other supplements, DGL, etc. I seem to have three or four decent days and then one or two either so-so or bad days. I am not sure why. That may just be what the disease is going to be like for me without the PPI. I am being careful with the diet, taking my supplements.
I find this tolerable, but do not know what is going on internally and if those two days when I have heartburn are doing serious damage to my esophagus.

With respect to the poster who wrote that being off PPI's made her constipated after a few weeks, I experienced all sorts of weird side effects during more than six or seven weeks as I was trying to come off the Aciphex. I had constipation, bloating, pain in my sternum and all sorts of other weird symptoms I never had before the PPI. Now, I seem to just be back to the same old heartburn that got me on the PPI in the first place, but all the other weird symptoms have sort of resolved. Maybe five weeks off a PPI is not long enough to figure out what is PPI withdrawal and what are one's own symptoms. Unfortunately, neither of my doctors has been much help in this regard.

Rose
Hi everyone,

Well I tried something different for me this morning. I am at 3 1/2 weeks off Nexium and have been treating with Tums/Gaviscon and occassionally Zantac. When the heartburn hits, it is absolutely dreadful. Pain in my esophagus and awful burning. I can see how people just go back on the PPI's because if I had to live this way indefinately, I would be miserable.

This morning I took a Zantac 150mg on an empty stomach. So far so good. Perhaps I need to do that until things settle down. There are so many unknowns, it just seems like a game we are guessing at what is the right and wrong thing to do.

I do know that I had considerable physical side effects and I have to find a way to stay off the PPI's.

So frustrating....
[QUOTE=LMF123;4226248]Hi everyone,

Well I tried something different for me this morning. I am at 3 1/2 weeks off Nexium and have been treating with Tums/Gaviscon and occassionally Zantac. When the heartburn hits, it is absolutely dreadful. Pain in my esophagus and awful burning. I can see how people just go back on the PPI's because if I had to live this way indefinately, I would be miserable.

This morning I took a Zantac 150mg on an empty stomach. So far so good. Perhaps I need to do that until things settle down. There are so many unknowns, it just seems like a game we are guessing at what is the right and wrong thing to do.

I do know that I had considerable physical side effects and I have to find a way to stay off the PPI's.


Hi LMF:

I am so glad you brought up the point about taking Zantac on an empty stomach. I meant to post about this, but I had completely forgotten about it it until you mentioned it in this post.

When I take the Zantac first thing in the morning with water and wait thirty or so minutes before I eat anything else, the Zantac seems to be absorbed and work better all day. When I am in a rush and take the Zantac along with all my other vitamins and breakfast, it seems to either not work or not work as well. It took me a while to figure this out but I have seen a definite pattern. I now take Zantac with water first thing in the morning, take my shower and when I get out of the shower and dry my hair, then I go and take my vitamins with almond milk and whole grain toast. That seems to work reasonably well or work perhaps ninety percent of the time.

I now have to go back and pay closer attention to see if any future "bad" days correlate with a day when I was in a rush and could not give the Zantac the chance to be absorbed by my stomach before I took a bunch of other competing stuff along with it.

Maybe this information will help others who are also using the H2 blockers instead of the PPI. When I took Aciphex, I could take it any time, with or without food. Before that, when I took Zegerid, I had to take it first thing in the morning on an empty stomach and wait thirty minutes before I could eat anything else.

I don't know if others see a correlation between how they take their medicine and its effect.

I am still hanging in there. I had another decent day today. I did not notice any heartburn all day and did not find myself thinking about it either, which is a nice break.

I could not have stayed off the Aciphex without some other type of medication to ease the rebound. The heartburn was so bad the first two-three weeks that I would have gone back running to the Aciphex. It was worse than anything I experienced before I began to take the PPI. This is why I am now trying so hard to stay off the Aciphex and continue taking milder/older medications like Zantac.

Rose
[QUOTE=marigoldgirl81;4226912]Well, i was never one of the lucky ones ppi's helped, so my esophagus has been burning every day for like 9 or 10 months now... i have no choice but to get off these as they are what is killing me i think..BUT i am seeing a naturopathic dr now and he said he has treated about 400 of my cases. My husbands cousin is also a naturopathic dr in another state and conferred (sp?) with this dr.'s opinion independently. Basically, they said they are seeing alot of people whom for various reasons get on ppi's, but then develop worse symptoms or side effects, etc. Ppi's encourage gastroparesis since you have such a lack of stomach acid, which is happening to me, when there isn't a proper ph balance in my stomach, the duoedoum (sp?) won't open correctly allowing fermenting gases up the esopahgus through the LES. There is much more to it. Also, my constant throat/skin infections DEFINITELY are related to ppi's. I knew it, they have been improving (knock on wood) since cutting down to 20 mg prilosec a day. For someone whom has had esophagitis everyday for so many months, coming off ppi's has been, torturous to say the least....but i now have lost 30 lbs!! during my ppi therapy since last July...NOT good, under 110 now. So, i have no choice, wish i wouldn't have let my dr tell me the ppis would never cause all of this...too trusting i was..you live and learn.

So, i am on a incredibly strict diet by his nutritionist and everything has to be pureed. I had no grain, dairy or meat for 1 1/2 weeks, now allowed brown rice here and there. My ND said he doesn't know how all of these GI dr's get away with prescribing these and never doing anything about what is actually out of balance, they just mask the symptoms. We have no money and this is NOT cheap, but i am so sick that i have decided to try this dr out. He has explained what is going on in my GI system so much better than 2 GI's and one internist. Boy, are we a bandaid nation or what...my oh my, what a price to pay.[/QUOTE]

Marigold:

I would love to read more on what your naturopath is telling you and the reasons behind the treatment he or she is prescribing. The idea of eating pureed food when the stomach is irritated makes good sense to me. It gives your gut a chance to rest.

My acid rebound coming off Aciphex was horrible and I think it has lasted nearly three months. I feel like I am just now beginning to have more "normal" days on the Zantac. The first month off PPI's, not only did I have horrible attacks of heartburn, but I also had bloating, pain and many other symptoms I had never suffered from before. Anything I ate gave me heartburn. I think even pureed food would have given me heartburn. I immediately cut out the main offenders such as coffee, alcohol, etc. but even then I would have days of constant heartburn and throat irritation.

I had to do some digging to come up with literature on rebound and finally found some journal article somewhere that stated it could last three or more months. I am glad I read that or I would have run back to the PPI after two weeks of misery.

What makes me really angry is that I was on an H2 blocker and not doing badly three years ago when I went to the GI doctor to see why I could not get rid of the heartburn and find out whether something else was wrong. The PPI's were pushed on me as "far superior" and guaranteed to make me feel better. Nobody told me about side effects and I failed to do my research back then.

I am very health conscious. I don't smoke or drink alcohol in excess. I am not overweight at 125 lbs. I exercise. I still ended with this darn GERD and now have osteopenia to boot due to PPI use for only three years!

I may have to do some research on naturopathic medicine to see if I can find books to read and see what their philosophy is in this area. I feel modern traditional medicine has failed me on this GERD/PPI deal.

Rose





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