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.
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.
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.
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
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.
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.
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.
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?
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.
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.
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
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.
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 !
Re: Taking a giant leap of faith going off of PPI's!
When sphincter isnt workig properly I don't believe it miraculously starts to. That is why people like us have gerd chronic acid reflux. As for the lung and shortness of breath i had that but bought an adjustable bed and sleep highly elevated. After that, it went away. ****** way to sleep but it's better than feeling you can't take a normal breath.
Re: Taking a giant leap of faith going off of PPI's!
Gonzoe I sleep elevated , it helps somewhat but is no cure. Sure doesn't hurt though, I'm used to it now.
If the sphincter can suddenly quit working due to inflammation can't it start working again once it heals? Not sure but another question for the doctor next visit.
Re: Taking a giant leap of faith going off of PPI's!
Thanks Jonah, I'm trying to keep in tune and figure out when it's coming on..but it's been hard to tell. I also sleep elevated, but I'm not sure that does anything. In fact last night I threw the wedge pillow on the floor and slept with two pillows. I am so sick of waking up with constant neck and shoulder pain from that pilllow!
I have Nexium samples, not sure if I should try them instead of the omeprazole...I hate meds (side effects) and and it takes a lot for me to start something new, but I'm willing to try to be able to breathe normal again. My mother takes dexilant for GERD, may try one of those.
Let us know what your doctor says tomorrow about the sphincter healing. I'm putting a call into mine too. I have to get this under control.
Wishing us all healing thoughts!
Re: Taking a giant leap of faith going off of PPI's!
I hear ya messes up my neck and head ache but after I took nexium n stopped abruptly I'm sitting up sleeping now lol this is even worst, Im having bad day today do much damage but scared of ppi
Re: Taking a giant leap of faith going off of PPI's!
Hi Mountain Reader,
I wanted to give you some of my experience stepping off of the ppi Prevacid. I was taking 30 mg twice a day, similar to your dexilant....its actually the same drug without the dual delivery system.
I have tried, unsuccessfully three times to get off of prevacid. I finally have had some pretty good success and wanted to share it with you.
My prevacid I buy is a capsule. It is full of little white granules. I was instruced by my gastro as follows: (Any other way has been unsuccessfull)
Open one of the capsules and play pharmacist, separating the granules on a paper plate or very flat surface, separate them into halves and then separate the halves into quarters. Its not exact science, you just eyeball the amount of granules in the four piles until they look equal. I then put a whole pill and the 3/4 granules in little disposable plastic containers I buy in bulk from Smart and final. So when your done you should have two weeks supply of a 1 3/4 of prevacid (I find it easier to sit down and do all 14 days at once)
Then after two weeks you cut cut the granules in half, so your taking 1 1/2 pills for the next 2 weeks. Then down to 1 1/4 pills for two weeks...etc until your down to 1/4 of a pill. The next dose NEEEDS to be 1/8 of a pill for two weeks, then go to nothing.
My gastro said I have to pay attention to my body.....if within a few days I feel any burning sensations then I am to go to the 1/8 granules every other day for a week, then to every 2 days for a week, then to every 3 days for a week, until I am able to go 7 days between medicine. By then there should be no rebound.
I have tried cold turkey...failed... I have tried to do the Pepcid in place of the prevacid...Failed...tried to cut out one pill....failed..... THe rebound acid is
100x worse than why I even got on the pills in the first place.
Well I am now down to 3/4 capsule from two and have had a fantastic transition until the last few days. Its nothing major, but when I lay down to go to bed, I get a burning sensation, so I have been taking Gaviscon Advance from the UK. I ordered it online and it is soooooo incredible! So worth the added shipping.
It is not the same as the gaviscon here. That has aluminum and magnesium and verry little sodium alginaate( foaming ingredient). The UK stuff has two ingredients...1000mg of sodium alginate and potassium. It makes a thick raft barrier, that blows doors off of the USA gaviscon liquid.
I wish you luck in this process.....It is in your best interest if you dont have to take these drugs.
They are way overprescribed, and I have become deficient in Iron, Magnesium, B12 and D, all from these pills. I started getting laryngospasms (airway closes and your cant breathe) from magnesium deficiencies,,,,its now listed on Dexilants website as a new warning .....scary stuff.
I cant absorb the vitamins and minerals due to depletion of stomach acid. So they are not as safe as they tell us they are.
Keep me posted on how your doing, and please order that gaviscon advance from a online pharmacy in the UK, I get it from chemist direct. Worth every penny. I order 4 bottles at a time to stock up, since it takes 2-3 weeks to ship.
Hugs
Kelly
