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Old 07-03-2011, 05:07 AM   #1
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Is anyone just stuck with taking PPI's forever? Feeling hopeless.

Previously, I had been on PPI's for about 8 years. Went off last August until now. During that time it seemed to wax and wane but never enough to even resort to Zantac, just DGL at times. Now it's back for the last 4 weeks and Zantac was helping at 150mg 3x/day but gave me headaches. Because this was causing me great anxiety I made the painful decision to go back to the Aciphex yesterday.

I just feel hopeless like I'll never be able to get off these pills for good. I do all the right things. There is no more diet or lifestyle changes I can do. I am VERY strict. I've tried many natural things but they don't help long term. I envy those who are able to control their reflux long term without meds.

My symptoms are basically heartburn but only during the day and seems to subside after dinner. It also does give me throat tightness. No stomach problems. My GP told me to try for two weeks and see how I feel but I know it's going to be hard.

Anyone else feel the same way?

 
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Old 07-03-2011, 11:30 AM   #2
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Re: Is anyone just stuck with taking PPI's forever? Feeling hopeless.

I have the same symptoms for 2.5 years. Diagnosed with AR/GERD and Hiatal Hernia, I was given Nexium. My symptoms are Gas/Bloating/Pain/Belching all the time.
I only took the Nexium for a week, afraid of getting hooked on them. Now I have a new symptom, chest pressure making me short of breath. I am thinking of starting the Nexium again but not so sure after reading your thread.
If I had few symptoms like you I think I would just take Gaviscon 3x pd.
Its difficult to know what to think as a lot of people still suffer whether they take PPIs or not. Solofelix.

 
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Old 07-03-2011, 01:11 PM   #3
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Re: Is anyone just stuck with taking PPI's forever? Feeling hopeless.

Unless some new treatment comes out on the market I'm stuck on PPI's for life. I know there are long-term side effects of being on PPI's for so many years, but in my case it has become a necessity.

I have LPR and GERD. Originally, I kept things under control with diet and lifestyle changes, then with OTC meds, then with low-dose PPI's and eventually on double dose PPI's. Ironically, most PPI's don't do much for me either. I'm currently on Dexilant 60mg. My GI doc would like me to take the Dexilant twice per day but insurance won't cover that at all. Right now, I've been on PPI's about 11 years or so in one dose or another.

My reflux is "silent". It irritates my lungs and throat but I don't actually feel the acid. Problem in my case is that it also triggers my asthma to the point it becomes life-threatening. I will happily take the PPI's over not being able to breathe, even with the potential long-term side effects.

I had a Nissen Fundoplication that has been extremely successful, but I still have chronic acid reflux that measures as extremely severe on pH testing. The acid is coming up in a gaseous form. Short of completely shutting off my esophagus from my stomach, there is no solution...and that isn't a solution since I couldn't eat. My LES just doesn't function like it should. Because of that, I rely on the PPI's to help control my symptoms.

I'm sorry you are so down about what you are going through. I've been there many times and haven't found any one thing that is the answer when things are so bad. The one good thing that seems to be a constant is that I'm able to keep my symptoms under control part of the time. For me is cycles around so at least I have some times with no discomfort even though I'm never free of the acid coming up.

I hope the aciphex helps you get things back under control.
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Last edited by MountainReader; 07-03-2011 at 01:12 PM.

 
Old 07-03-2011, 01:44 PM   #4
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Re: Is anyone just stuck with taking PPI's forever? Feeling hopeless.

Thanks for the replies.

I was thinking of staying on the Aciphex for a couple weeks, then hopefully wean again and see how it goes. Problem is, each time I go through this "weaning and waiting" (to see how my reflux will be post-meds), my anxiety gets bad and, in turn, makes the reflux worse. Uggh! My naturopath is not going to be happy with my decision, although it ultimately is up to me. This condition really sucks.

 
Old 07-03-2011, 11:44 PM   #5
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Re: Is anyone just stuck with taking PPI's forever? Feeling hopeless.

Hi, MountainReader. I would like to know in what way has the Nissen Surgery helped you.
Also do the PPIs help with your breathing.
I am an Asthmatic, I also have AR/GERD and a Hiatal Hernia. I know that my Asthma is well controlled but These past few days I feel really short of breath and am constantly belching and full of Gas which I feel is all to do with the AR/GERD. I'm not taking any medication at present but have been prescribed Nexium in the past. Don't feel any Acid .
Lump in the throat is back again. Maybe the Hiatal Hernia can cause breathing symptoms.
I wish you well with your own problems, Solofelix.

 
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Old 07-04-2011, 02:46 PM   #6
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Re: Is anyone just stuck with taking PPI's forever? Feeling hopeless.

I had my Nissen Fundoplication surgery in October 2008 after I was unable to get my asthma under control despite multiple asthma and reflux treatments. I was chronically coughing and couldn't get a good breath. I was very worn down and afraid of having another emergency asthma attack where I almost stopped breathing again.

When I had the surgery, both my GI doc and my Pulmnologist felt that it was the best next step. I was recommended to a local surgeon by 4 of my doctors so I felt a good bit of confidence in his skills. From my internet research, I knew that there was a high success rate for fundoplications for people with acid reflux who have breathing problems as their symptom.

When I had my surgery, I had been coughing constantly for months. When I woke from the surgery, my cough was gone. I was still careful with my diet and stayed on my PPI's, but I felt 1000% better. The surgery is a serious decision and I wouldn't recommend it lightly. I think it was the right decision for me.

Surgery doesn't "cure" acid reflux. It does help by acting like your LES. With the stomach wrapped around the esophagus, when the stomach contracts, it contracts around the esophagus to help keep the acid from coming up. The wrap needs to be loose enough though that it still allows food to go down.

In my case, last year I started having some problems again. Through testing, I found out that I still have acid coming up in a gaseous form. My surgery is still holding though. I know from past experience that my symptoms would be much much worse without the surgery.

Even today, I'd make the same decision again to have the surgery even though it didn't solve my problem totally.

The PPI's don't directly help my breathing. What they do is to help reduce the amount of acid that is coming up and irritating my lungs and throat. The Advair, Singulair and Albuterol helped my breathing. Singulair didn't do much by itself, but with the Advair, it did help.

My diagnosis was extremely severe GERD/LPR with a sliding hiatal hernia. My only symptoms have been the breathing and coughing problems from the acid irritation. Years ago, when I initially developed GERD, I had some belching, but PPI's helped with that.

While things are much better with surgery and PPI's, I know I will always have AR problems though. At this point, it is my challenge to keep my symptoms under control.

Not sure I answered all your questions. Just sharing what I've learned through experience.

Take care,
MountainReader
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Old 07-05-2011, 11:39 AM   #7
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Re: Is anyone just stuck with taking PPI's forever? Feeling hopeless.

Hi FlyerFan, I've also been on PPI's (or their earlier relatives) for about 20 years, with some time off in between here and there. After learning that PPI's cause further damage to the intestines by preventing stomach acids (which digest food), I knew I needed to get off PPI's. I've had irritable bowel syndrom since FOREVER, so these pills are NOT a good idea to continue. Well, the last year, I've been having 'attacks' which I think are gall/liver related (which also play important role in digestion). Waking up in the night with pain in the upper abdomen and/or nausea, which leads to vomiting and passing out! That's really the last straw for me, passing out on cold hard tiles in the middle of the night. So, this week, after my last vomiting/fainting incident, I decided to just do it! I've stopped taking the PPI, and the daily prescription allergy med (for hives), and also a non-steroidal lung inhaler. But my fear is on the ACID. I'm trying to do a light version of alkaline diet (on VERY limited money), so I'm drinking buttermilk (disgusting), taking licorice DGL (way too many), and eating avocado and steamed carrots for dinner. The first 2 days went amazingly well, but it's not so great anymore. It's not like CRIPPLING acid, but it's constant. I'm hoping that it will adjust... I really CAN'T get back on these evil drugs... they releave one symptom but cause other illnesses, and that's just not ok with me. If you find something that works, please let me know, and I'll do the same. Good luck and God's Grace.

 
Old 07-05-2011, 02:51 PM   #8
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Re: Is anyone just stuck with taking PPI's forever? Feeling hopeless.

Quote:
Originally Posted by stienster View Post
Hi FlyerFan, I've also been on PPI's (or their earlier relatives) for about 20 years, with some time off in between here and there. After learning that PPI's cause further damage to the intestines by preventing stomach acids (which digest food), I knew I needed to get off PPI's. I've had irritable bowel syndrom since FOREVER, so these pills are NOT a good idea to continue. Well, the last year, I've been having 'attacks' which I think are gall/liver related (which also play important role in digestion). Waking up in the night with pain in the upper abdomen and/or nausea, which leads to vomiting and passing out! That's really the last straw for me, passing out on cold hard tiles in the middle of the night. So, this week, after my last vomiting/fainting incident, I decided to just do it! I've stopped taking the PPI, and the daily prescription allergy med (for hives), and also a non-steroidal lung inhaler. But my fear is on the ACID. I'm trying to do a light version of alkaline diet (on VERY limited money), so I'm drinking buttermilk (disgusting), taking licorice DGL (way too many), and eating avocado and steamed carrots for dinner. The first 2 days went amazingly well, but it's not so great anymore. It's not like CRIPPLING acid, but it's constant. I'm hoping that it will adjust... I really CAN'T get back on these evil drugs... they releave one symptom but cause other illnesses, and that's just not ok with me. If you find something that works, please let me know, and I'll do the same. Good luck and God's Grace.
Hi and thanks for your post. Well, I took the Aciphex for 2 days this past weekend and I couldn't stand the anxiety I was getting from knowing this is not right for me. I have adjusted my diet also eating more alkaline producing foods and I have been taking DGL and digestive enzymes (2 each meal). Yesterday, I took a Pepcid in the morning but needed nothing the rest of the day except a few DGL. Today, I took nothing and have only needed DGL a few times. I felt a little burn, but not like I have been feeling the past couple weeks (which really wasn't that bad). I'm trying to relax a bit which is easier said than done. So, I don't know if it's the alkaline diet or the enzymes or what but I hope I continue on this road. My diet consists of lots of veggies, fruit, nuts, seeds and a little turkey and fish. I'm also gluten free for the most part and stay away from sugar and any processed foods.

Good luck with staying off the PPI's. It's not easy and it seems, for me at least, that it's going to be a lifelong battle. If I can get by with Pepcid here or there, I'll be OK.

 
Old 07-07-2011, 03:18 PM   #9
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Re: Is anyone just stuck with taking PPI's forever? Feeling hopeless.

Flyerfan

I read your original post. You weren't specific about your symptoms after 8 years on PPIs.

I was on a PPI (Pantoprazole) for 3 years. In November 2010 I was diagnosed with Osteopenia (early stage Osteoporosis) Switched to Zantac shortly thereafter and was doing great until 3 weeks ago when I began feeling nauseous. Back on Pantoprazole for a week and feeling better. Back to Zantac for a few days and the nausea returned. This morning I took a Zantac but will switch to Pantoprazole and consult with my Primary in a couple of weeks. Mabe high calcium intake will offset the bone loss from the PPIs. I currently take 2 x 1000 units of Vitamin D each day and drink milk.

Don't try to tough it out too much. If a med relieves your symptoms, take it. Get a bone scan if you haven't done so.

Good Luck

senior41
07/07/2011

Last edited by senior41; 07-07-2011 at 03:18 PM.

 
Old 07-08-2011, 12:19 PM   #10
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Re: Is anyone just stuck with taking PPI's forever? Feeling hopeless.

I've read that PPI's were not meant for long term use and if patients can manage without them the better there is a way also to be weaned off them and maybe if your heartburn/gerd is not bad you can manage by diet change, natural ways etc.

 
Old 07-08-2011, 05:09 PM   #11
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Re: Is anyone just stuck with taking PPI's forever? Feeling hopeless.

Senior41

I had no symptoms while on Aciphex. Worked wonderfully for 8 years. I only got heartburn after stopping them.

I'm only 42. I don't think my insurance will cover a bone scan.

 
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