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MountainReader 08-23-2012 09:08 PM

Taking a giant leap of faith going off of PPI's!
I've been on PPI's of one form or another for over a decade. I've only gone off of them for short periods of time for testing when my reflux was extremely severe.

About 4 years ago, I had a successful Nissen Fundoplication. Except for a few months about a year after surgery, I don't experience any of my previous reflux symptoms at this point. I've stayed on my Dexilant 60mg daily since it came on market not long before that. I've been visiting regularly with THREE specialists and my PCP who all recommended I stay on it because prior to surgery my acid was literally life threatening because it was coming up in a gaseous form and irritating my lungs and causing severe breathing problems.

I'm very scared of the possibility of of any acid triggering my asthma again if I have problems coming off of the Dexilant. Once my breathing issues are triggered, my issues become severe. I visited with my PCP and he was very reluctant because he knows how severe my asthma was and how difficult it was to get under control. He agreed to let me try to wean to H2 blockers, one per day to start and 2 per day if I start with symptoms. He did give me the stipulation that if I have much trouble I will go back on the Dexilant.

The reason I'm taking this "leap" of faith now is that I'm dealing with TMJ issues and my orthodontist is very worried about my lack of calcium absorption due to the PPI's. Even the supplements I have taken aren't probably doing much good since the calcium really isn't absorbed well. My PCP agreed that this could be worthy of concern. That is the only reason he was willing to let me try this. He did to labs to check my Calcium, Magnesium and Iron so that we can monitor things.

Here's hoping for positive results. :)

janewhite1 08-23-2012 09:35 PM

Re: Taking a giant leap of faith going off of PPI's!
I hope you get through it! So far, I haven't been able to quit post-Nissen, but I know a lot of people do.

Have they discussed tapering you, like going to 30 for a while?

MountainReader 08-23-2012 10:18 PM

Re: Taking a giant leap of faith going off of PPI's!
He discussed going to Prevacid for a while first as a step down from the dual action Dexilant. I'm deciding to try the H2 blockers first. If I need to, I can try going back on the Prevacid before going back to the Dexilant if things get bad.

Honestly, I haven't tried this since my NF so I really don't know what to expect.

My orthodontist who recommended I try going off the PPI's has offered to help me with the nutritional side of things as well so I'll be working with him as part of my treatment as well.

Gonzoe 08-24-2012 12:19 AM

Re: Taking a giant leap of faith going off of PPI's!
What do you mean about the dual affects of dexilant? I thought it was just another ppi

janewhite1 08-24-2012 09:48 AM

Re: Taking a giant leap of faith going off of PPI's!
The Dexilant pills are built with a special delivery mechanism where some of the medicine is released immediately but some of it releases slowly over 24 hours. Other PPIs are similar chemicals but don't release the same way.

Gonzoe 08-24-2012 10:13 AM

Re: Taking a giant leap of faith going off of PPI's!
Oh thanks maybe this pill is good. Btw I have tmj an now have severe bone aches. I can't even wear dress shoes no more bc hurts so much and I'm on Zantac only. Now i really don't want try dexilant if bone loss be even worst. The specialest said he's been taking side 15 when i asked him about rebound n bone lost and he's fine. Lol damn dunno what do

MountainReader 08-24-2012 10:38 PM

Re: Taking a giant leap of faith going off of PPI's!
I think your treatment decisions really depend on your own individual needs.

It has been a while since I had my calcium checked, but my levels were pretty good on PPI's for years.

My reflux was extreme so even with my tmjd issues, I would choose the PPI's again since lifestyle measures and other meds weren't working for me.

Have you been tested for your TMJD issues? A 3D CT scan of your TMJ can show any bone loss in your condyles. There is good info in the TMJ board. There are some good tmj treatment options available.

Leo255 08-26-2012 05:15 PM

Re: Taking a giant leap of faith going off of PPI's!
Why don't you try to cut your dose in half? Once you're at that stage for a while w/out problems, then maybe you can decide if you want to quit altogether.

MountainReader 08-26-2012 05:28 PM

Re: Taking a giant leap of faith going off of PPI's!
Thanks for the suggestion. I've been on Dexilant 60mg. Due to the delivery method, I can't cut them or reduce with my current prescription. Because I want to try to get off the PPI's sooner rather than later, I'm choosing to try the H2 blockers first instead of filling a new PPI prescription and going on a lower dosage of PPI's for a while. I well know that I may need to go back to the PPI's and try to go off more gently if this doesn't work.

It has only been a few days, but so far I'm doing ok with the change. I'm hoping to give it a month before I commit one way or another to my long term treatment choice.

Gonzoe 08-26-2012 06:37 PM

Re: Taking a giant leap of faith going off of PPI's!
Wow dexilant is that hard get off? Damn I probably won't fill subscription than. Can't you ween off it by taking every second day than third day and fourth day than off?

MountainReader 08-26-2012 07:56 PM

Re: Taking a giant leap of faith going off of PPI's!
I don't know that dexilant is actually that hard to get off of compared to other PPI's. I just happen to have been on extremely high dosages of PPI's for many years. I'd also been diagnosed through repeated testing to have extremely severe reflux which caused me life-threatening asthma/breathing problems. (The worst both my ENT and Pulmonologist had ever seen.) That is why I ended up having surgery.

I've been fairly stable for a few years now. That is why I'm taking this leap of faith to try to go off of PPI's without weaning down the dosages. If I start having symptoms on the H2 blockers, I'll call my doc and he will give me a script for a lower dosage PPI to try before I go back to my current level if needed.

In general, some people don't have problems getting off of PPI's, while others get the rebound effect. Until you try, you don't always know which group you will fall in.

Johnah 08-27-2012 12:52 PM

Re: Taking a giant leap of faith going off of PPI's!
MountainReader I will be interested to see how you make out. Please keep us posted. I am on 60 mg Dexilent as well and found it has worked reasonably well for me. My symptoms are lung irritation like yours, no heart burn etc. just irritates the heck out of my lungs. I have only been on it for about a month but it has helped a lot compared to Omeprazole or Prevacid. Have only been on PPI's for about 4.5 months. Would like to taper off at some point.

Have you ever gotten a explanation as to why some of us get this lung irritation but little else in terms of reflux symptoms?
I find that the lung irritation is actually greater when my stomach begins to empty rather than just as I eat and the acid begins. Often wake up about 4- 5 a.m and take a tums as it will bother me at night as well despite my stomach being empty by that time. Don't quite understand that either.

Gonzoe 08-27-2012 12:57 PM

Re: Taking a giant leap of faith going off of PPI's!
It might be bc you esophagus hasn't been inflammed badly bc when it is it's very sensitive. I just notice after my rebound effect I get burning everywhere n my esophagus is inflammEd bc I have difficult swallow n food going down if solid hurts certain parts

georgi17 08-27-2012 09:56 PM

Re: Taking a giant leap of faith going off of PPI's!
Johnah what exactly do you feel with your breathing? I too, have major lung irritation and shortness of breath. It isn't always the same. My chest hurts and feels sore, like I am sick. This can be together with shortness of breath or alone. And vice versa I can have the swollen nasal passages and not being able to get a full breath but not always have the chest pain along with it. At the moment I have both. I am taking omeprazole twice a day. Haven't found it's helping much with this problem at all. Are you taking anything else besides your ppi? Do you have any side effects from dexilant? The breathing really is the worst for me.

Johnah 08-28-2012 06:02 AM

Re: Taking a giant leap of faith going off of PPI's!
In the spring when I was very sick with this I had all the same feelings with my lungs as you have described. Shortness of breath, sore lungs , feeling like you can't take a full breath etc. After a couple of months of omeprazole and watching my diet etc. it started to get better but I don't think I saw a great deal of improvement until I went on Dexilent and started taking a H2 mid afternoon as well. I had consulted with my specialist and he said no problem adding a H2 mid day, I take one before bedtime as well. These are prescription strength Pepcid 40 mg.

Found I get little in the way of side effects with Dexilent, use to get dizzy with Omeprazole every time I stood up and I think it made me a little achy.

I can feel the irritation start so I am quick to add tums etc to the mix if needed through the day. Also found it helps if I wake up early morning, say 4-5 a..m. to take a tums with a drink of water before going back to sleep. For some reason I would get a very sore chest first thing in the morning so I must be breathing it in during the night. I take it that the Pepcid probably lasts 6 hrs or so and then the acid comes back even though I don't eat before bed so my stomach must be empty. The early morning tums seems to help with this. My esophageal sphincter must relax more at night.

All in all I just really focused on when I get the sense I am aspirating gastric acid and tried to minimize it, seems to be working. I feel much better. When I feel pain in my chest it is a sign that I am aspirating acid as a tums can make it go away almost immediately. So I am past the point that my chest always hurts. Of course bending over , poor posture , anything that puts pressure on my stomach makes it worse. Not sure I am seeing any real improvement in how my sphincter is working just mitigating the impact of it not doing it's job.

Have had to watch to make sure I don't get constipated so every third day or so I take a Probiotic with my dinner (if I take these on an empty stomach they kill me) which seems to keep things moving well.

All in all it has gone well, my next goal is to taper off the Dexilent but don't want to push this for a bit. Get the feeling though that I may be on PPI's for some time unless the doc has another answer because I am not confident my sphincter will start doing it's job any time soon. Time will tell. Have to say my life is much better now , been since March though getting here, not a fast process and takes some self discipline regarding lifestyle. Hope this helps georgi !

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