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BecPPIhater 01-20-2014 04:54 PM

Acid rebound from NEXIUM!!!

I have read almost all other posts about peoples experiences with 'acid rebound' from PPI's. I have stopped taking Nexium many times over the past 2 years, only lasting approx 6 weeks each time. In May I managed to stop for 8 weeks with the help of Gaviscon dual action liquid. And recently I tried to stop again, I have been off Nexium 40mg for 3 months, only using Gaviscon dual action liquid, which I have been drinking daily. Last week I decided that I might need a little more help, and have started taking Ranitidine 300mg once per day. I have some relief, but still have burning in my stomach, occasionly in my chest. I also get intermitent sharp chest pains located on the left side near my breast. My GP seems to think this is related to GERD, causing an esophygal spasms. I am not so sure, the pain can be so bad and last for so long that I think I am having a heart attack. I have been to the emergency room many times, every time my ECG is normal. I also experience a weird burning sensation in my left shoulder blade and left arm at times, I can not work out if these happen when my stomach is burning or not.

I was first put on Nexium in February 2012, I took it for approx 2 months, and when I stopped I had this insane daily burning in my stomach which I had never experienced before, nor had I ever experienced any form of acid reflux or indigestion.

I have tried many things to ease my pain. Nothing seems to be working. Can anyone please tell me of your experience with this, and how long it took your stomach to return to normal. How long does it take for Ranitidine to clear the burning and chest pains?

I am feeling so depressed that I have been battling these short sharp chest pains for almost 2 years now, and have been unable to stop the burning in my stomach :(

rich911 01-20-2014 07:32 PM

Re: Acid rebound from NEXIUM!!!
if you get an answer please let me know- have been dealing with same issues for 7 years, chest pains/burning stomach.throat, etc...there are many-many issues that gerd cause.i take alot more meds then you,twice aday i take pepcid/pantoprozole/sucralfate with antacids. all that and i still get reflux all the time,never stops.

BecPPIhater 01-20-2014 07:44 PM

Re: Acid rebound from NEXIUM!!!
Oh that is terrible. Do you get the quick sharp chest pains too? That can sometimes linger for a day. Horrible :(

Power on 01-20-2014 09:04 PM

Have you consider you might have a hiatal hernia? Or your esophagus is inflamed pressing against your vagus nerve just a thought I have daily pain after eating for several years now

BecPPIhater 01-20-2014 09:44 PM

Re: Acid rebound from NEXIUM!!!
I have had 2 upper endoscopy's over the past 2 years, and a capsual endoscope all showed nothing. I should note that my first endoscope pre nexium was perfect. My 2 tests since then whilst I have been trying to give up the Nexium both showed redness and inflamation.

kacyc 01-21-2014 07:44 AM

Re: Acid rebound from NEXIUM!!!
HI, you have my full sympathy, as a fellow ppi hater and rebound sufferer I totally understand what you are going through.

I will tell you my experience and my thinking.... I tried to stop (40mg Omeprazole) and couldn't, I went immediately back on it, but as 40mg was making me so ill, I only went back on 20mg. In effect I had reduced from 40mg to 20mg in one go.

At the same time I was learning about rebound and what in fact causes it and when I understood what was happening, I knew that i had to go through the agony to get better. I stayed on 20mg until I began to feel a lessening of symptoms, not entirely better by any means, but ready to begin reducing again. It took about 3 months to go from horrific mind blowing agony to a more tolerable level of pain. Had I waited longer I'm sure the pain would have lessened even more but I was keen to get off the stuff.

I could not go through that again and could not face coming off 20mg in one go and having that degree of agony again. So, since then I have been weaning off it slowly. My own way is to lower the dose gradually by removing the granules from the capsules. That way I am in control of exactly how much I am taking. It is a slow process but for me its been the difference between making it possible vs. being impossible.

Personally I was determinded not to take ranitidine because anything that supresses acid will hold up the process of rebalancing.

The main factor in knowing whether it is rebound (which I'm sure you have already read) is that when you try to stop taking PPIs you will feel worse (much worse) than you ever did before you took them. That is rebound. You end up needing more the drug that is causing the problem. It is a vicious circle and very hard to get out of.

My way has worked for me. I am on the last lap of the horrendous journey. And in a much better place than I was when I first tried to come off PPis.

What i can tell you is that the pain has lessened and lessened the less meds I am on. Every reduction hurts, and causes a worsening (rebound) but as the months go on every worsening is less worse than it used to be, if you get what I mean.

If you come off in one go it takes between 2 and 6 months to rebalnce back to normal. IF you can tolerate the pain.

It will take longer if you wean off more slowly but the pain will be more tolerable and over time I regained more of more of my life back, which was rendered completely unlivable during the worst of my rebound experience. If you have already done it then you are through the worst of it. I would encourage you to stick at it and it should begin to get easier and easier.

DGL licorice helped me a lot. And Gaviscon sometimes, but be aware that although it doesn't supress acid, it only neutralises what is there, the high alkaline content can trigger more acid to be produced. Even Gaviscon states in the British National Formularly that it may cause rebound.

This is a horrible situation, it is a trap, there is no easy way out. But there is a way out. You need belief, determination and strength.

I hope you feel better soon.

BecPPIhater 02-27-2014 02:33 PM

Re: Acid rebound from NEXIUM!!!
I can not thank you enough for your reply Kacyc. Its nice to know I am not the only one going through this. How are you going now?

I went onto 900mg of Zantac for a short while, but this did not help. When I stopped, I suffered what I think was 'rebound' from that too. I have only been off that for 2 weeks. Still having daily burning in my stomach, which I am used to now, although some days are worse then others, its the pains in my chest that scare me.

I agree with you, it is definately a trap, I just wonder how long it will take my body to rebalance. I have been off Nexium 40mg for 4 months, with only a short attempt with Zantac, and the whole time I have been drinking Gaviscon like its going out of style, thinking perhaps stopping the Gaviscon may help, as sometimes I think it is making my heartburn worse, what do you think?

Are you med free now?

Love and support to you. This is a hard road we have to go down!

Bec x

kacyc 02-27-2014 03:12 PM

Re: Acid rebound from NEXIUM!!!
It definately is hard. I feel for you if you are going through this.

I am nearly there, currently on just 3mg in the morning and 3mg in the evening. Quite a triumph from 20mg and 20mg!! Just a little bit further before I can come on here and say 'I did it' but I am nearly there and I am so close I now believe it is possible; for a long time I didn't know if it would be possible.

As I said, my own personal method was to try and not suppress acid any further. When I was really bad, in the beginning, gaviscon didn't touch the pain anyway, and as I have improved i reserve it for really bad days, when I take it at night. Even gaviscon, although not an acid suppressant as such, can cause rebound, and I just believe every day you suppress the acid is just a day you are delaying the next rebound day. Too much alkaline (gaviscon) can stimulate the stomach to produce even more acid. And does nothing to help get the gastrin level down. Sadly it is the acid that will get the gastrin down, which in turn will then lead to less hypersecretion of acid.

Research has shown that rebound can last between 2 - 6 months. Like everything there are people outside of those norms.

It has taken me so long, because I choose to do it slowly. It was that or not do it at all. If you have already stopped your meds completely then you should be through the worst.

Stay strong, you will get there. Hopefully not too much longer.

BecPPIhater 02-27-2014 03:40 PM

Re: Acid rebound from NEXIUM!!!
Yes, very hard. So painful, I even get pains in my shoulders and back!

It is amazing that you have managed to get down to 3mg!

I made the mistake of stopping cold turkey. Gaviscon hardly touches it for me either, usually I think I have having a heart attack. Its that bad. But I am sure you understand that.

How long has it taken you to get down to 3mg?

It really is comforting to talk to someone who understand the Nexium rebound feeling, I live in hope that one day I will wake up and it will be over!

kacyc 02-27-2014 04:19 PM

Re: Acid rebound from NEXIUM!!!
In truth, it has taken about 2 years, but don't let that put you off. You can opt to do it quicker than that - if you can handle the pain.

I would say the first 6 months were the worst: rendered totally disfuntional due to pain. Then the next 6 months were slightly easier. Then the next year was less excrutiating, less all consuming and I could do a bit more. The past 6 months have been better, but every time I reduce I still get a noticeable worsening of symptoms, but it takes less time to ease up and I can reduce more consistently now. Had I done in one go, I reckon it would have been about 6 months in total.

It is a little known phenomena this rebound hyperacidity and I just wish it was acknowledged by the medical profession. I have found the denial makes it all the more difficult to deal with.

And the attitude of people who don't understand has been another distressing factor. People assuming its just acid reflux and that you are making a fuss about something that hundreds of people deal with, I found very hard to take. I hope you have got good support as you go through this.

BecPPIhater 02-27-2014 04:26 PM

Re: Acid rebound from NEXIUM!!!
Wow, it seems it takes a long time for our system to return to normal.

2 years is a long time, but at least you have been seeing some improvement I guess.

For me, I have spent 2 years, going on Nexium, coming off, going back on because of the pain, going off.

This is the longest I have been without it. 4 months coming up to 5 months without.

Sounds like soon you might be free of your medication, which is so inspiring!

Sometimes I wonder if I will ever be able to eat again, without a burning pain!

I do not have support from my doctor, he thinks I am nuts. And 2 GI's I have seen have suggested I take an anti-depressent to alter my feeling of pain. They seem to think the pain I feel is in my head.

I think maybe stepping away from the Gaviscon might help my system return to normal quicker. In all honesty when I stopped the Nexium I started having Gaviscon after every time I ate, which I guess could be prolonging the balancing of my stomach?

kacyc 02-27-2014 04:43 PM

Re: Acid rebound from NEXIUM!!!
it could do, maybe try and cut down on that too. And just use it when you really need it. Are you always in pain or does it fluctuate? Mine varies a lot. I have good days and bad days.

Did you try DGL licorice?

Also you could try eating carrots. They are alkalising. I eat about 2-3 raw carrots after every meal. They help. Without any side effects!!!

I also drink Kukicha Japanese tea.

What do you eat? Obviously cut out all known triggers and keep to a bland, spice free diet until you are better.

I would encourage you to stick with it as you have come so far this time. Do everything you can to help yourself and give yourself the best possible chance of recovery.

BecPPIhater 02-27-2014 04:49 PM

Re: Acid rebound from NEXIUM!!!
Mine varies a lot too, some days are just horrible, even coming to work is a struggle. And then I get a couple of days where I feel some what 'normal' and then followed by a few horrible days!

I have not tried DGL licorice, what does that do?

Thank you for the suggestion. I will try the carrots, and the tea do they help with burning in the stomach? My burning tends to be in my stomach, with only occassional heart burn.

It doesnt really seem to matter what I eat, the burning is still there in my stomach anywhere from straight away to an hour or so after I eat. Although I do notice if I have wine or anything like that I burn almost immediately.

I really do want to stick with it, sometimes the pain just seems unbearable, and it seems so easy to grab that little pill that I know will stop the burn. I guess thats the trap huh?!

I should also ad that I have had a copletely 'normal' gastroscopy result for my stomach. So I know that I do not have an ulcer.

kacyc 02-27-2014 05:07 PM

Re: Acid rebound from NEXIUM!!!
DGL licorice is supposed to encourage the production of mucous within the stomach which protects the stomach lining from acid. it is also alkaline. It helps the burning pain.

[I use capsules and open them up and pour the powdered licorice into water to make a hot drink, that way it goes straight into the stomach and is more easily absorbed than capsules]

Its encouraging that you have had a normal endoscopy, but remember its an ever changing thing. If you are exposed to prolonged acid it can change. Thats why I did/ do everything to protect the stomach and oesophagus while I was exposed to hyper amounts of acid.

The fact that alcohol is burning you almost immediately suggests that your stomach is inflammed. Alcohol can only make matters worse. I would encourage you to have zero alcohol until you are fully better. I know it may sound harsh, but it will help you recover quicker. And prevent an ulcer from forming whilst you are going through this.

BecPPIhater 03-03-2014 05:32 PM

Re: Acid rebound from NEXIUM!!!
I dont want to speak too soon, but I have actually had 3 really good days, with minimal burning in my stomach.

Did you too experience burning in your stomach Kacyc? I get this more so then heart burn.

Imlily - I did get dizzy when taking Nexium, and also when I first stopped taking it.

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