want to get off PPI, but scared and don't know how

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hope12
New Member


Date Joined Oct 2011
Total Posts : 6
   Posted 10/21/2011 8:16 PM (GMT -6)   
New member here...to be as brief and to the point as possible...I was put on PPIs back at the end of May for very mild heartburn/very slight reflux, persistent nausea, and a "nervous stomach." I think some of this was due to the fact that I'd also been unnecessarily put on Klonopin (a benzodiazepine). I've been off the Klonopin for about a month after a miserable taper from that, and am still not feeling well.

I don't think my PPI is helping me with anything so I want to get off it soon. I'm on 60 mg of Dexilant. I went to see my gastroenterologist yesterday and he told me I could just take it every other day and then stop. I've read enough about acid rebound to know it's really not that simple. I've tried to read around to see how to taper, but it's hard because I haven't run into many people who have taken such a high dosage. Some suggestions I've seen involve substituting the Dexilant with OTC Prevacid and taking 30mg of Prevacid for a couple weeks, then 15 mg for a few weeks, then going to every other day for a few weeks, and then stopping after that. But I know even that kind of taper produces rebound for some people. How is that rebound best handled? I've seen people use Zantac, Gaviscon, DGL...I take a probiotic daily right now but that's about it.

I'm very scared of handling this taper because I don't know what I'll be able to eat and how sick I'll end up feeling. I'm already way underweight, 5'4" and only about 95 lbs. I also have a fairly demanding life -- full time college student -- and I really don't want to be miserable. But I don't think staying on the PPI is the answer...I can tell I'm not digesting food properly. I just don't know what to eat in order to not lose more weight. I can eat some foods that generally bother people with GERD now -- red meat, tomatoes, milk (though I don't eat any of it in excess)-- but I know all that will have to go when I start this taper.

Does anyone have any experience that could advice me to the most painless way of getting off the PPIs? I'd really appreciate it.

WJF
Regular Member


Date Joined Sep 2011
Total Posts : 273
   Posted 10/22/2011 8:59 AM (GMT -6)   
Your situation is somewhat similar to mine. I am 5' 5'' and 108 lbs. That is the lower bound of healthy range according to BMI. The PPI I took also caused my indigestion.

What i am doing is, I split my 3 meals into 5 smaller meals (they total up to be roughly the quantity of the 3 meals). And then I avoid all GERD triggers and all food that can cause gas. And then I eat some high-calorie and nutrient-rich food. It's difficult to find those that aren't GERD trigger and gas-producing. I did find avocado juice and groundnuts work fine for me. That doesn't mean they will work fine for you too. You have to do some testing. If you are lucky you will find some that work. I managed to stop my weight loss and even regained 1kg. Now my weight pretty much stabilized.

Here's my diet plan. it's an Asian diet, feel free to adapt to your culture. Remember to balance between grains, vege, fruit and meat.

breakfast - porridge (with cooked groundnuts) + bean curd
in between: an apple
lunch - rice + 1 green vege (safe) + potato + 1 white meat
in between: avocado juice + groundnuts
dinner = rice + 1 white meat + potato

besides diet, I do some light exercise for about 30mins daily, and avoid heavy physical activities (to preserve calorie).

hope12
New Member


Date Joined Oct 2011
Total Posts : 6
   Posted 10/22/2011 2:17 PM (GMT -6)   
Thanks for the diet advice, that definitely helps.

How did you actually go about getting off the PPI though? I just really don't know how to do it without it being painful...

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 10/22/2011 3:02 PM (GMT -6)   
Guess I have always been a lucky one and just up and stopped the PPIs without any rebound. Good luck in your quest.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09
#3 on 8/24/11

hope12
New Member


Date Joined Oct 2011
Total Posts : 6
   Posted 10/22/2011 3:48 PM (GMT -6)   
Does anyone know if I try to taper off the PPI and I can't deal with getting off if I can just go back to taking it like I was and be okay? For instance if I drop my dose but it's almost impossible to eat...if I can go back up to the dose I was on long enough to be able to eat more/gain some weight back before trying again?

I'm just scared of so much doing this...I'm scared of what the PPI could be doing to me as I've read all sorts of things about not getting proper nutrition while on them, leading to a whole host of diseases...but I'm also scared of getting very sick in coming off them.

Thanks everyone.

WJF
Regular Member


Date Joined Sep 2011
Total Posts : 273
   Posted 10/22/2011 7:22 PM (GMT -6)   
The truth is, unless you are a lucky fellow like hope12, there is no way to avoid pain when you do that. Everyone's condition is unique. What works for me may not work best for you. You need to do some research on how others get off their PPIs (just search the forum for "getting off Nexum"), and adapt their methods to yours by trying out and dropping things that don't work for you.

Here's some generic advices.
1. Weaning off usually brings less pain than cold turkey, but takes longer time.
2. Change your mindset. You need not be scared or worry about what PPI can do to you. Anxiety and GERD come side by side! Treat it is an "interesting" puzzle.
3. Those that suffered a lot from withdrawal are people who were on long-term PPI treatment, e.g. > 8 weeks.
4. Take it easy, you can buy time and regain some weight first before going off PPI.
5. Diet is the key. Good luck!

hope12
New Member


Date Joined Oct 2011
Total Posts : 6
   Posted 10/22/2011 8:42 PM (GMT -6)   
I guess I'm just confused about several things: how much of the dose to cut at once, and how long to stay at a reduced dose before cutting it back again. Also I'm not sure if switching from Dexilant to Prevacid will be safe.

I'm unfortunately one of those who has been on long-term treatment, about 5 months and counting now.

mock turtle
Regular Member


Date Joined Mar 2011
Total Posts : 467
   Posted 10/22/2011 9:36 PM (GMT -6)   
hope12

yeah it can be a bit scarry but i believe you will be alright

after being on PPIs for 5 months i think you are right to ask your doc if a more "gentile" reduction period is in order

PPIs are long duration in their action (compared to H2s) so spacing out pills longer andd longer can work.

before you split pills find out if you are dealing with timed release

maybe you could ask your doc if there is a way you can use an occasional H2 acid reducer if you get a lot of pain

H2s act pretty fast.... but maybe even better.... is to take a calcium carbonate antacid pill (otc) as needed or mix up a small glass of sodium carbonate (baking soda) if you get bad pain

ive done all of the above and it worked for me

i think you will be ok just have a back up plan!

plus lots of good advice above about small meals and all he other suggestions

hope12
New Member


Date Joined Oct 2011
Total Posts : 6
   Posted 10/22/2011 9:44 PM (GMT -6)   
My doctor won't help me!

He told me I just could take the Dexilant (at the ridiculously high 60 mg dose) every other day for a couple weeks and just stop -- that's it!

The Dexilant is a timed release, that's why I can't split it -- that's why I feel my only solution would be to switch to another PPI like Prevacid that is available in smaller doses.

Did you come off a PPI, mock turtle?

mock turtle
Regular Member


Date Joined Mar 2011
Total Posts : 467
   Posted 10/22/2011 9:52 PM (GMT -6)   
yes i did three times...ive been cycling on and off cause im afraid of issues that have to do with b12, intrinsic factor etc and osteoporosis and other nutrient absorption issues

seems to me that your doctor is not being responsive

im no doc so i cant "advise you" per se but i would switch to a pill i could split and id taper off more slowly

can you talk to another doctor or maybe see a "nurse practitioner" or "physician assistant"

i live in the pacific north west (usa) and we have several teaching (university) hospitals and its not too expensive to go to one of the associated clinics and get seen for a second opinion

hope12
New Member


Date Joined Oct 2011
Total Posts : 6
   Posted 10/22/2011 10:33 PM (GMT -6)   
I've actually talked to two doctors already, this was the second one, the first one told me to just stop cold turkey and take Mylanta or something, he had no idea what he was talking about...so I don't know.

Those are the exact reasons I want to get off; the ones you mentioned...

How slow did you taper off then?

mock turtle
Regular Member


Date Joined Mar 2011
Total Posts : 467
   Posted 10/23/2011 8:45 PM (GMT -6)   
i was taking omeprazole 20mg morning and 20mg night

first step, i kept 20 mg am and cut the pm dose to 10mg

i did this for 5 days

then i reduced the am dose from 20mg down to 10mg

so then i was taking 10 mg omep in the am and 10mg omep in the pm

i continued this regimen for 5 more days and then reduced the pm dose to zero

at this point i got reflux pain and took sodium bicarbonate as needed but sparingly

after about 5 more days i eliminated the am dose of omep

but due to pm pain i started taking a half dose of otc H2...famotidine if i remember correctly...low dose, on and off for a week or two

hey the pain has never gone away for a long time cause you know i have acid reflux disease!

but this is how i tapered down

i went back on PPIs from time to time after that but never for more than a few weeks and then i would try other things in between and would boost calcium and b12 intake etc during non PPI times...i know this sounds crazy but dealing with GERD - LPR has been a game of hop scotch for me for some time now

please please, find a sympathetic doctor or nurse so you can get qualified medical advice...dont take my word for anything

best wishes
mock turtle

ps everybody is different and how long you were on PPIs might well change the schedule you need to use to reduce or eliminate PPIs

so get medical advice and , (AND!) listen to your body!

Post Edited (mock turtle) : 10/23/2011 7:50:51 PM (GMT-6)


justsayno
New Member


Date Joined Mar 2014
Total Posts : 18
   Posted 3/5/2014 12:43 PM (GMT -6)   
I am a new member here and have been reading other's posts for a few weeks now regarding getting off ppis.
I have been on Prilosec for approximately 10-12 years for a previous diagnosis of GERD. This medication, like so many other ppis, helps some what with the symptoms of GERD but not really a "cure" for it. In fact, I had just as many symptoms ON this med as I have had trying to get off of it.
After discovering the connection between ppis and bone loss, and finding out that I now have borderline osteoporosis, I decided that any benefit I may get from being on a ppi is far outweighed by all of the potential and current problems I now have from being on them for so long. So about 3 weeks ago I made the decision to wean myself off of ppis. I started taking about 3/4 of a capsule the first week, 1/2 of a capsule the second week, and 1/2 of a capsule the third week and this week every other day. Next week I will try 1/2 of a capsule every third day and then every fourth day...maybe. I am hoping to be able to just stop taking them by the second week of this month. Here's hoping anyways.
I wanted to try the DGL chewable tablets but just don't like chewable meds like Tums/Rolaids. I have alternated the ppi with Zantac and take Zantac at night also. Have tried ginger tea but find it aggravates my stomach and actually makes the heartburn worse. Right now I am trying to deal with the rebound by taking a teaspoon of honey, Alka Seltzer Gold, and 1% milk. some have suggested that milk causes your stomach to produce more acid and should be avoided if you have heartburn. I guess if the result of being on long-term ppi use has diminished the acid content in my stomach, then maybe more acid at this time isn't a bad thing. For me, this "remedy" has been a lifesaver!
I have had days (and nights) recently when the heartburn was so bad I was tempted to give in and go back to taking a ppi...but haven't yet and hope I won't ever have to again! When I remember the times of severe heartburn/reflux while ON a ppi, I am determined to get off this med!
I am also watching what I eat-avoiding known trigger-foods and eating mostly low-carb,bland foods. I miss things like coffee, chocolate, spicy foods, etc. but it's a small price to pay to be ppi-free.
Some of the natural remedies aren't for me- like apple cider vinegar, DGL, and ginger but I think everyone has to find out what works for them.
Hopefully, I can log on here one day to post my success in getting off ppis for good!
Meanwhile, thank you to everyone who has posted here with their experiences and tips for getting off ppis!

javery
Regular Member


Date Joined Sep 2013
Total Posts : 262
   Posted 3/5/2014 1:55 PM (GMT -6)   
In case this may help, I was able to get off PPI's, but not medication entirely yet. I was on PPI's for about 8 years I stopped cold turkey about 6 months ago and at the rate that things seem to be improving, I thought for sure I'd be good within a few months. After a few months had passed I was so tired of taking TUMS that I decided to start taking an H2-blocker instead of going back on the PPI's. I am now down to 2 Pepcid Complete tablets a day, some days I take half a tablet twice a day, some days I take 1 whole tablet twice a day. Depends on how I'm feeling. I will say that even though I'm still taking some sort of medication, I feel much better and am much happier for being on what I am now vs. the PPI's. I don't have any horrible side effects and I can feel my food digest much quicker. I have more energy on less sleep. If I have to keep taking what I am for the rest of my life, I would be happy with that as long as I don't go back to the PPI's. But my journey with heartburn is not over and I am still optimistic about things getting better yet.

It will take time and there will be times that you want to go back, but if you can pull through, it is worth it.

justsayno
New Member


Date Joined Mar 2014
Total Posts : 18
   Posted 3/5/2014 2:45 PM (GMT -6)   
Thank you, javery, for your encouraging words.
I am determined to be rid of the ppis but, like you, not sure I will be able to be completely drug free. I think the H-2 blockers don't have as many side effects as the ppis. So if I have to rely on them every day or only occasionally, then so be it. It's certainly better than being dependent on ppis.
Today was the first day I have been mostly heartburn free since the last century! Lol Tomorrow could be a different story...
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