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I've been debating about trying to get off the Nexium I've been taking for the past three years, and the time has finally come! With all the adverse consequences for long term PPI use, I've known it was in my best interest to d/c use. But, Nexium has been the only drug to help with the esophagael pain that occurs with mast cell flare ups, so I've stayed on it out of necessity.
But, now I want/need to come off of it. Not only do I think it is in my best interest long term, I also need to get off of it so I can get my Chromogranin A (CGA) level retested as it has been consistently high. (CGA can be falsely high due to PPI use. Elevated CGA can be indicative of carcinoid issues.)
So, here's the question; is there a "best" way to wean myself off the Nexium? I think I remember reading here that rebound can be fairly bad when stopping PPIs. Any suggestions on how I can best get through this process with the fewest side effects?
I seem to remember Tex and Zizzle writing about PPI use on several occasions so I'm hoping you might have some "tips" on how to get through this successfully. I really want to come off this stuff but I'm petrified that I'm going to have to then deal with the esophagael pain again. Quite a catch-22.
I'm starting tonight with no Nexium and hoping for the best!
You should NEVER stop taking proton pump inhibitors cold turkey. You have to wean yourself off them gradually or else you’ll experience a severe rebound of your symptoms, and the problem may end up being worse than before you started taking the medication.
Ideally, you’ll want to get a lower dose than you’re on now, and then gradually decrease your dose. Once you get down to the lowest dose of the proton pump inhibitor, you can start substituting with an over-the-counter H2 blocker like Tagamet, Cimetidine, Zantac, or Raniditine. Then gradually wean off the H2 blocker over the next several weeks.
Remember to use the usual practices for avoiding acid reflux, while you're retraining your lower esophageal sphincter. (such as: avoid eating for several hours before bedtime, avoid certain foods that are known to cause reflux, never sleep on your right side, etc.)
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I hear you and I agree with you. I've been on PPI's (prilosec then nexium for more years than I can remember). I stopped nexium once and ended up with Barretts. I recently stopped nexium again and, of course, did it wrong. I did stop cold turkey but I've only taken one nexium in the last couple of weeks (can't remember now when I stopped). It was rough for the first week and, of course, I still have to be rather careful about what I eat. I used Rhizinate to help control the heartburn (tastes really bad) but I also had a lot of nausea, gas and bloating.
I'm now taking some digestive enzymes. Don't really know if they help, but the symptoms are better. I just know when that burning starts I have to do something quickly. I am very nervous about Barretts returning but I am also nervous about osteo problems. I'm sure I should have "weaned" but I didn't and hate to try and start over - although I might... who knows.
I wish you good luck and hope you will post on your progress. I'm very interested.
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
Trust me to do it wrong. That's what's happening!
I went off Nexium cold turkey, and have been in horrible pain ever since. Makes me even more sure I have Barrett's. When I had an inflamed esophagus I never had this pain.
Shirley, did you have to take Nexium again to get the Barrett's under control?
Your post came at a perfect point in this agonizing tapering process. I dropped from 40 mg/daily (prescribed dose) to one day on and then one day off of the Nexium. MISTAKE! On the day off I had such terrible bloating, gas, burping and of course "heartburn" if I tried to eat. (Was not expecting the bloating and gas, which is why I appreciated your post. It's not just me!) I did this for a couple days and knew this plan wasn't going to work. So, I rethought the taper and have decided to go with 20 mg daily for about 10 days and then 20 mg every other day for several weeks. I'm hoping this will get me off of it but will still allow me to function, including being able to eat. I read that this worked for others as long as they proceeded SLOWLY.
In reading Tex's link and then some others, it doesn't seem there is a common protocol for tapering off PPIs, which is surprising. It seems it's "every man for himself" when it comes to this issue. I called my GI doc for guidance and didn't hear back, so apparently as good as he is, he also must not think this a difficult process. I'm determined to get off of this at least for awhile so I can have the blood work needed, but honestly if my life is going to be so miserable off of it, I'm going to have to rethink this. Maybe the goal should be a very low dose as opposed to coming off of it altogether. Too early to know at this point, but I don't want to go back to daily GI symptoms, this I know! It really is a Catch 22.
I'll keep you posted on what I hope will be slow but steady progress breaking the "purple pill" habit!
Thanks for your feedback.
Lesley - Agreed cold turkey is no way to go on this one! Can't even imagine it quite honestly.
Julie
luckily for me - when i was given Nexium by the GI, some discussions with Tex confirmed that i did not ever want to start it.
My system is quite delicate, moreso since the histamine issues, any major change in medication amounts (like if i forget to take it) causes me issues. I am a big advcoate to weaning on and off any medication slowly, reducing it 10 - 20mgs at a time in weekly periods.
I actually do the same with any supplements (powder or liquid) small doses and work up to the full dose.
I found the high doses of Vit D fantastic for the GERD 3000iu - 5000iu per day. It is summer here and the gerd is almost non existant so now my dosage is about 1000iu per day.
fingers and toes that your transition goes well
take care
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Gabes, you were so wise to look for a different way to control gerd. Kudos to you. Unfortunately, All I knew was that it worked for my husband so I did it.
Lesley, I did go back on Nexium. I was not having all the problems you are having. I just had severe gerd and occasionally it hurt to swallow food.
I want to say something else here before I forget. Remember that I started on Prilosec. The reason I switched to nexium was because the reflux would "break through" with the Prilosec. Basically, is there really any difference between the two except that one is twice as strong as the other? Anyway, it makes me wonder if eventually they will have to come out with one 3 or 4 times as strong to keep you from having reflux if you've been on it long enough. I agree with Tex that it causes more problems than it solves.
Julie, I didn't realize you'd get such symptoms by going one day on and one day off. As I mentioned, my symptoms were pretty bad for about a week but then improved. Not to say I am symptom free but I didn't expect to be this soon. I'm glad I posted about the gas and bloating if it helped you realize that it must be a normal symptom. I wasn't sure either, to tell the truth, so you helped me also.
Please be sure to try and do SOMETHING to keep the reflux down. Your esophagus will be damaged by prolonged exposure to stomach acid.
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
Gabes, I have been taking Vitamin D every day for several months... I'm up to 5,000 now. Sure glad it helped you but I don't know if it's helping me or not with reflux. Perhaps it would be much worse without it.
Another aside...... I think that long term use of PPI's affect your body's ability to produce the acid it should. I really don't "get" how low stomach acid causes reflux but I don't doubt it does. I think your body will take time to get the acid balance back to "normal".... if it ever does and if you have a weak esophageal sphincter you will always have some reflux.
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
The lower esophageal sphincter, (LES), is basically controlled by the pH of the stomach, (that is, the sphincter takes it's cue from the pH of the stomach). The lower the pH, (IOW, the more acidic), of the acid which is in contact with the bottom side of the LES, the tighter the LES will clinch. Research shows that as the pH of the stomach increases, (becomes less acidic), the more the LES tends to relax. That's why taking a PPI causes the LES muscles to slowly weaken, because they never have a reason to clinch tightly. The LES muscles should slowly strengthen, after withdrawal from a PPI.
As I've mentioned a couple of times previously, when I was in the hospital recovering from abdominal surgery, about the second or third day I was eating, and I choked on something, and coughed up my NG tube and respirator tube. The doctors insisted that I had to take a PPI each day, or they would reinstall the respirator tube, so I took a PPI for about 3 days, (I think). After I got home, I had acid reflux problems, just from that short treatment regimen. After I figured out not to lie on my right side, and stopped eating for several hours before bedtime, the reflux problem went away. It took at least 4 or 5 more months, though, before I could lie on my right side, without having reflux problems, so it may take a long time for the LES to recover after a PPI has been used for months.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Thank you for the explanation, Tex. I really appreciate it because it puzzled me. I am worried about mine never going back to normal due to, not months, but years of PPI's.
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
I'll bet it will eventually get there, but you're right - it may take a year or more.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Shirley
i have people like yourself to thank for those decisions. People willing to share and discuss their conditions, the symptoms and the pro's and cons of treatments is what helped me.
and most of it was luck of timing, the articles were just starting to be published that revealed what the PPI's were doing. I am starting to think that one should not take a med unless it is has been on the market for ? 5 years when there might be some data about what its long term effects can/might be....
the other thing i am mindful of with this discussion and some of the other discussions related to histamines, mast cells, is how long it takes our bodies to heal from damage like that.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Julie,
It's been hell. However, I don't want to go back on it unless the damage being done by not taking it is worse than the alternative. I am trying to get my doc to answer these questions, but he won't answer. It's driving me NUTS!
I went off PPIs twice with the cold-turkey method. (I didn't know about the tapering.) I was so sick from the PPI the first time that I felt better within a couple of days after stopping. Last year, I also went off cold-turkey and felt the burn for a week or two but nothing that was serious to me. Then I started Betaine HCl and I felt even better. (I added acid, IOW. My bowels improved too).
Fast forward. Two weeks ago my throat was examined and it seems I have laryngeal reflux, so I stopped the Betaine HCL. I wonder if I really need *more* Bet HCL, not less. I never, ever had trouble with the Bet HCl.
Does anyone have experience with Bet HCl? I refuse to go back on PPIs b/c it gives me palpitations too.
tex wrote: Research shows that as the pH of the stomach increases, (becomes less acidic), the more the LES tends to relax. That's why taking a PPI causes the LES muscles to slowly weaken, because they never have a reason to clinch tightly. The LES muscles should slowly strengthen, after withdrawal from a PPI.
I found some interesting medical theories and success stories that show niacin reduces GERD very successfully but again, it was not research. Got any research on that angle to add to our arsenal?
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