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The long term use of PPIs

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Posted 5/13/2007 10:23 PM (GMT 0)
Hi Everyone,

I posted this in one other forum and I think I should post it here as well.

I now have positive confirmation that the thing that made me very sick for 9 months (and much longer in a more functional capacity) was the PPIs (prevacid, aciphex, Nexium, et al) that I took for almost a decade. I got worse and worse over a 9 month period, starting last July, and then, after I stopped taking them, I got better and better until now. I'm almost back to normal (and no longer ready to jump off a bridge). I met the clinical criteria for Chronic Fatigue Syndrome and had horrible anxiety and panic attacks (even before I finally got "sick"). In late January, after reading up on digestion and particularly the problems that can be caused by having too little stomach acid, I decided to discontinue taking Prevacid. That's a decision I wish I would have made a lot earlier.

Basically, the lack of stomach acid caused me to stop assimilating protein properly and stopped me from absorbing many vitamins and minerals properly. This caused me to get very sick, both physically and mentally.
If you are taking this medication and choose to continue long term, I suggest that you monitor your health closely. If you start having some health issues of any kind, do not assume that it has nothing to do with the PPIs. I had a bunch of seemingly unrelated symptoms (like problems sleeping, fatigue, anxiety, further stomach or digestive problems, psoriasis, carpal tunnel syndrome) and now I know it was the PPIs all along. It's simple: stomach acid is required for proper digestion for many reasons and your digestion will not work right without it. You will suffer, it's just a matter of how long it takes and how badly. For me, it took a couple of years of daily use before any symptoms started and then I flew under the radar for another 6 or 7 years before I totally hit the wall.

Some people have to be on this medication and it is valuable in a short term capacity (as it was originally designed to be used) but I am now convinced that very few people should be taking this medicine long term.

Let me know if you have any questions.

Post Edited (Lenny66) : 5/13/2007 4:38:03 PM (GMT-6)

Posted 5/17/2007 6:32 AM (GMT 0)
cool  Thanks Lenny!

I joined this group because my husband has GERD, Reflux or something like that, it makes cooking for him a nightmare. It was hard enough to cook for him with his high cholesterol, but I managed to make tasty food with the help of garlic, onions, pepers, tomato dishes, and spices. We both benefited from the low cholesterol diet. This Reflex though, he gets angry when I bring up that it seems to hit harder when he's stressed. He gets really mad, insisting that stress has nothing to do with his condition. He claims, he went to Reno to play poker in a tournament, he played a long time, in fact he made it to the final table, but played two hands and then lost. He very hungry, hadn't eaten for a long while. When he went to the restaurant it was closing and all he could get was Manhatten Clam Chowder (Tomato Soup with clams) and it burn him from throat to rectum, as if he had swallowed battery acid. It's burned now and will never get better, it's been almost two years sad and no improvement. He swears he damaged his stomach his stomach, his stress has absolutely nothing to do with it. Yet, his personality is one of control, he must control things to feel at ease, how often does that happen?

He is getting worse in other parts of his body, his limbs, dizziness from a permanent inner ear problem he's had for 10 years. I wonder how much of this is a reaction to other things. You should try to run a poll over the weekend if people feel better or worse after longtime medication treatment.

I've also noticed in the postings a connection to anxiety attacks, stress, and other not so great lifestyles.

I hope doctors are noting with their GI patients, general disposition, personality type, and overall success in treatment.

To say nothing of not being able to eat as you wish, lasagne and garlic bread has always been a comfort food in our family. It must affect you mentally not to have foods you love, and the dulldrum of bland foods meal after meal.

You've got something there Lenny, keep getting that message out!

Thanks, Gremma

Posted 5/17/2007 4:25 PM (GMT 0)
Thanks, Gremma.

Wow, I can't imagine how your husband could have gotten so bad all of a sudden. If I were him, I would start taking aloe vera juice, DGL, L-Glutamine and Slippery Elm.

I'll look into the polls. I don't think that many folks have been on this stuff as long as I was and it would be very helpful to see what people who've been taking it for several years have to say.

For me, I don't think the GERD is or was stress related. I have a pretty laid back disposition. I suspect there are multiple things that lead to it.
Posted 5/17/2007 11:02 PM (GMT 0)
yeah  Lenny,

He took 2 Prevacids twice a day for about a year plus. Now he takes one day. There is definitely a correlation between a day of stress and his breath being sour stomach. I'm talking about him being the bathroom in the morning, after returning emails and phone to clients in different time zones, getting upset, then going to shower, shave, etc. to go the office. An hour later, after he's gone-I go into the bathroom and I can still smell sour stomach. I think something's really wrong past Reflux or GERD, that's just not normal. He flosses his teeth and many of the "flicks" end up on the bathroom mirror, on cleaning day, I use a razor on the flicks, it's easier than waiting for the windex to break 'em down, and when I razor them off I smell sour stomach!

On weekends, when not stressed, the smell is gone. I worry about him, he gets so angry sometimes. I figure if he doesn't get things in proper proportion soon he's going to drop dead of a heart attack.  In his mind, no one has it worse than he does, his case is rare and con not be compared to anyoine else.

Glad you have found your way out of the jungle. Good deal!

Posted 5/18/2007 12:32 AM (GMT 0)
I'm suspicious of PPI's, too, but I've talked to several doctors about it and they're not concerned about long term use. The way it was explained to me is that the body will make more of these proton pump cells or whatever to make the appropriate amount of acid required for digestion.

I don't know. But if you can link to some studies (not abstracts) I'd be interested to read them.

Edit: Anyway, everyone should talk to their doctors. Ask them the hard questions. People on message boards are great for raising questions but his case may not be definitive. Everyone's different. There should be phase IV clinical trials published somewhere on the internet. I'll look for them.
Posted 5/18/2007 9:45 AM (GMT 0)
eyes  One thing I've found for sure, not all doctors keep current with the latest statistics, research, or colleague findinds and correlations. You could go to three different Gastroenterologists and get three different theraputic plans.

One thing a proper diagnosis depends on is the patient giving an accurate lists of symptoms. Which in the old days when doctors could spend time with you and look at your case history, they might not only remember you, ut actually know you. Now, you have to find out ahead of time what symptoms are important to bring up and which ones are not connected yourself.  You have to be your own advocate.

Think about it, if you went to one Doc and told all the symptoms, but left out hiccups, would that change your diagnosis? What if driving home you realized you forgot to mention that in the morning you had a bad taste in your mouth.

All it takes is one omission, or adding one that my have been caused because you were stressed while eating and was a one-time thing. These message boards are only an exchange of one's personal experience, but hearing a case that sounds similar to yours, you may realize you never did tell the doctor about how walking after a meal made it worse might make all the difference in the world.

My Father died of stomach cancer, GERD can be a pre-cancerous condition. Diagnosis and proper treatment is critical to control symptoms. I'll listen to every case, consider every remedy, if it's fairly harmless, like drinking warm water with lunch and dinner.

Check with your doctor, you bet, but should also check your doctor out. Does he stay informed of new research in treatment, in harmful side effects of long term medications, and in symptoms that point to an agressive condition.

Posted 5/18/2007 4:34 PM (GMT 0)
Definitely. I won't just go to any doctor. I do my best to find out from friends and colleagues to find out who's good. Then, when I get in there, I can ask them leading questions to find out if they're up on what's going on in the medical world. Having anxiety/panic, as well, and just by being generally curious, I have a tendency to follow the research myself.

Most doctors assume their patients don't know anything (because most of them don't), but if you go in there with some knowledge and you show that you've done your homework on your condition, they'll speak to you much more frankly. Perhaps I've been good or lucky at picking my doctors, but most of them have passed my little tests with flying colors. Even the ones that didn't treat me effectively.

Medicine's both and art and a science. Medical schools often teach very different programs. So, yeah, you're likely to get different opinions from different doctors. That doesn't mean they're just guessing or don't keep up with the research. It's because they're smart people and critical thinkers who are interpreting things differently. While it can be frustrating to the patient, it can also be good for us because we're individuals, too, and respond to treatment differently.

That said, there are lazy doctors, especially in family practice. Need to avoid them.

When it comes to symptoms, I've always tried to encourage people to write down their symptoms and get it into the chart before they see the doctor. That way he/she can look at it along with the rest of your chart while you're waiting around in the examination room. Then, when you're together, he or she can start in on the follow up questions and nothing will be left out. It saves time for you and the doctor, and leaves little room for error/omission. Also bring in a copy of what you gave to the doctor with you to make sure everything's been discussed.

But in terms of the research on long-term use of PPI's, I haven't been able to find anything that suggests they're dangerous. There's a lot of studies underway (mainly in Europe, it seems) right now, though. In a couple years we'll know much more.
Posted 5/18/2007 8:30 PM (GMT 0)
debaser,

There aren't any long term test results right now, that's true. But if my stomach made more and more acid to overcome the fact that I was on PPIs, why didn't I ever need to up my dose? A constant dose worked for me for 10 years.

I don't think I've run across published results on the PH of people who've been on these drugs for a while (although it's been established that the PH in the "healthy individuals" they always use for studies increases to levels where there is little or no acidity). That's not surprising, though, since there's not very much info of any kind on long term usage. Until there is something more definitive, we have to read between the lines a little. For example, it was shown that people over 50 who are on PPIs are 2.6 times more likely to break a hip. That's pretty definitive, IMO. It certainly points to lower assimilation of calcium. Why would this be if our pumps were able to make more acid to overcome the deficiency?

It's also been shown that up to 30% of people have low stomach acid to begin with. And a high percentage of those people have GERD compared with the rest of the population. Why would this be the case if our stomachs didn't have trouble making a sufficient amount of acid in the first place?

I submit that your doctors would be the ones who have to back up their assertion that our stomachs can just make more proton pumps to compensate. In all of my research and my conversations with doctors, I have never heard this. But the notion that we make less and less acid as we grow older is commonly acknowledged.

Lenny
Posted 5/19/2007 5:27 PM (GMT 0)
Lenny:  I was wondering if you are completely off all PPI's?  I have been on PPI's for over 1 year and in December my bone density test came back worse than ever.  My doctor said my osteopenia had already spread to my hips and that is because with the PPI I am not absorbing calcium (I do take calcium supplements).  I have been on a double dose of Nexium and still I have reflux.  The weird thing is that my stomach feels normal around 2:00-3:00 am even in the morning I am ok and when I take my dose of Nexium I start to feel the reflux and even my breath feels sort of hot like coming from my stomach (I hope it makes sense).  I really want to leave this drug but I am scared of the "rebound acid."  Did you have trouble leaving the PPI and having to deal with the "acid rebound?"  I have tried DGL but not the Slippery Elm.  Please let us know if you had a hard time coming off the PPI after so many years of use.  Thanks, Porcelain Doll Maker......
Posted 5/20/2007 4:19 AM (GMT 0)
Hi Porcelain Doll Maker,

Yes, I am completely off of PPIs now. It wasn't easy at first, but after week or so it got easier to deal with. Now, I get heartburn a couple of times a week and only when I eat certain foods, drink beer, etc. I have been able to manage it and I am confident that I would have been able to manage it all along. I only took PPIs in the first place because it seemed like such an easy solution to heartburn.

Have you tried digestive enzymes? I suggest you buy a good digestive enzyme (I'd try plant based first to see if that helps) and try Betaine HCL. Unless you know for a fact that your stomach is making too much stomach acid, I'd consider the idea that you may have too little. The Betaine HCL can help you determine that. Look up the protocol. Just start with one pill and remember that you can use a tums or drink some water if that causes you any discomfort.

Not sure why you feel like you notice reflux and have hot breath after taking nexium. Nothing much should be happening in your stomach until you eat something. I don't understand why just taking the nexium should make you feel these things. Have you had an endoscopy?

I wonder whether it's really "acid rebound" that's happening after people stop taking the PPIs. There's reason to believe that most of us who suffer from GERD have too little stomach acid rather than too much. It may be that when the stomach achieves a certain PH, the lower esophageal sphincter is signaled to close all the way and if the PH does not reach that level due to too little acid production the LES doesn't close all the way and we suffer from GERD. When you are taking PPIs, you still have reflux, of course, you just don't feel it because the PH in your stomach is past the point that would cause you discomfort. I'm wondering whether the period of significant discomfort that many of us feel after we stop PPIs is due to the proton pumps being burned out and lazy from trying so hard to to overcome the PH problem that PPIs present or whether maybe the lower esophageal sphincter is lazy for the same reason. It just may not be used to working right. But, for whatever reason, these things seem to improve somewhat in due time. It sounds like you don't have much to lose, so I'd give these things a try.
Posted 5/21/2007 12:55 AM (GMT 0)
It think it is very interesting the medication factor. If you back way off this part of the body and look at the body as a whole; people who diet, lose weight then eat again and gain weight, they usually gain more, weighing more than when they started. People who go on low-fat diets to bring down cholesterol and do so for quite a while, and go off the diet and eat something they really love but has a lot of fat, their body reacts with diarrhea for days. Or in the case of people whole are alcoholics or drug addicts that quit, maybe for years and then drink or use, they also assume like the person on the low-fat diet that they can have hamhaocks or pork ribs just like they used to, the addict/alcoholics drink and use like they used to and the body doesn't quite know what to do with strange element it hasn't seen for a while, they often O.D. and die. Our body is a machine, it requires certain vitimins, minerals, fiber, protein, and exercise for optimal fitness. It also produces all the necessary chemicals to process what "input" it gets. When you take something away for a period of time, your chemical body shifts it's chemical output to try and match, to continue a "normal" output. When you take it away, put it back, take it away, put it back, I think the body just says "I give up, I don't know what chemicals to produce to keep things level." I wonder what PPI's do to the chemistry of our bodies, does it deny us protein? Vitamins? Does our body get fooled into thinking it does not need to produce the chemical that best breaks down protein and calcium sending the necessary parts to the muscles and organs that give them optimal fuel? It's all so baffling. Sometimes I wonder if the East, which studied cause and effect, had the right idea that the body must tell you what is missing, where is there too much, trouble is I don't think we listen enough to our own bodies, we put our trust in Docs, who largely rely on drug companies because, for so long, we just wanted a quick fix. I know I've been guilty of that, I don't care what it is, just fix it, it hurts! I know I have been using fat free mayonaise for tens years, if I have a tuna sandwich away from home and they use real mayonaise, my stomach rumbles and I feel nauseous. I wish they could nail down once and for all, what causes GERD, Reflux, and acid stomach. My husband is a stress puppy, always has been. The last few years have been particluarly stressful for both of us. Yet he claims stress has nothing to do with GERD. I don't see of it can't be! If stressed, you produce more stomach acid, if you don't put, either enough of, or the right kind of food to soak, or use it up, it will stay in your stomach, cooking, waiting to do something, and if you lay down, it starts eating at your sphincter, soon you have nothing to separate your stomach and esophogus, and laying down always goes to your throat. Goollee, you can sure tell it's Sunday, too much time to sit here, better go make another stomach safe dinner.

Gremma

Posted 5/21/2007 6:45 AM (GMT 0)
If there is one thing to learn from Lenny's post, it is to do the tests such as manometry, ph testing, gastric emptying to find out precisely what is happening after you consume food. A gerd sufferer needs to establish if s/he has a defective LES or has a problem of motility?

Doll is right. The hot feeling after Nexium is definitely a feature. In fact, that's why I gave it up. Interestingly, Somac (protinix in the US) seem to have fewer side effects, although I'm not convinced that it works all that well.

By June, I would have been suffering from Gerd for 5 months and that is too long. I am having the aforementioned tests and if my results suggest I can benefit with surgery, I will do it. What have I got to lose?

Be sure I will post the results on this forum.

IMO, nexium is a pretty evil drug.
Posted 5/21/2007 4:48 PM (GMT 0)
Yeah, Christo. It's blows me away that most of us can't find a doctor who can systematically check our digestion, from start to finish, to figure out what's going on. A Heidelberg (sp?) capsule can be inserted into your stomach to check your PH and you'd think doctors would see that as a valuable tool. Yet, has anyone on this board had that done? Maybe, but I doubt it. I don't know what it costs to do that procedure but I can say for sure that it's a hell of a lot cheaper than a lifetime of PPIs. Are you implying that you are having that done?

So most of us have to resort to trial and error methods of our own. Sad.
Posted 5/22/2007 12:28 AM (GMT 0)
I've been worked over starting at the mouth and ending all the way at the other end (I was having more than just GERD symptoms). All they found was gastritis and hilatal hernia, which by itself will cause GERD. I knew I had GERD for a long time. I did have stomach PH checked. I don't remember a capsule, but there may have been one.

Anyway, my story is a very long one and I won't tell it all here. Basically I had GERD. But then my gallbladder went south and they didn't figure out that was the case for a LONG time because they thought my problems were ALL due to GERD. I felt worse and worse and never had any answers until finally they checked the gallbladder. It failed the test miserably and I had it out. However, by that time stomach troubles were deep in my head. I'd developed a modified panic disorder. THAT made my GERD worse, among other things.

I'm finally being treated for the anxiety/panic and GERD...don't have many problems anymore at all.

When it comes to the GERD part of the equation there's more than one way to skin the cat. There's natural ways that work for some people. Nexium works for some people. Prevacid works for others. We're all different. I still hope that the PPI's aren't dangerous long-term. It could be that people who take them for a long time will need some other sort of treatment for calcium problems. Or it could be that certain people just aren't candidates for long-term PPI use while others are. It's being studied. In the meantime I'm a young man with insurance and will continue to take them because they work. If studies come out that suggest I shouldn't, I'll look elsewhere.
Posted 5/22/2007 1:16 AM (GMT 0)
debaser,

Did you ever consider getting the chiropractic maneuver that treats hiatal hernia? It's not permanent but I understand that it can be effective.

I currently see a doc who specializes in osteopathic manipulation. If I had a hiatal hernia (don't know for sure that I don't. My last endoscopy was around 8 years ago) I think I'd give it a shot.

I hope the PPIs don't cause you trouble. My main goal in telling my story isn't so much to get people to drop the PPIs. It's more to make people aware that they should monitor their health closely and don't assume, if you run into any health issues, that they can't be related to the PPIs.
Posted 5/22/2007 11:16 PM (GMT 0)
cool  Thanks so much all you guys, just knowing there are other people out there who have already been there, or that I can speak out about is a big help. Even though I'm not the GERD, my husband is, I'm the one that has to feed him (old school, this generation of women are smarter, they make the guys cook, too). He is the typical "A" personality who has no time even to be ill. I try to keep up so that if weird stuff starts happening I might recognize it.

And he is now having stamia problems. He's tired all the time and has more back and neck problems. I still find it hard to believe that stress does not contribute to the onset of this, seemingly, long-term problem. As of late he has added anger to the mix so, I dunno sad .

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