PPI Dependency

By Stephanie, Health Guide Monday, March 29, 2010
  Now that people have been taking Proton Pump Inhbitors (PPIs) for years, the very long-term side effects are becoming known. In my last sharepost, I wrote about the long term effect of PPIs on your bones and promised this time to write about PPI dependency.   Many people have writ...
Becoming Aware of and Avoiding Medication Confusion
4/ 1/10 5:42pm

I've been on PPIs for about 10 years. When I have stopped taking them in the past, it only took 2 to 3 days and I start the heartburn, refluxing, etc.  My doctor at the time, and my doctor now have recommended that I stay on them,  I don't seem to be having any bone problems that I didn't have before. I am 55 and now take Protonix.  What do you think?   

  

Anonymous
Miss Diagnosed
4/ 1/10 7:33pm

CryMy Drs had me on PPI's for 1 and 1/2 years.  I tried almost all of them because I could get no relief.  I finally had to demand tests.  After the Bravo test it was determined I didn't have Acid Reflux.  They called it "hypersensitive esophagus"  meaning they don't really know.  I went off the PPI's cold turkey. My symptoms were the worse heartburn I have ever had. My GI wanted me to use Elival which is an antidepressent, which I refused to do.  I was misdiagnosed and no longer have much trust in the mainstream doctors.  I am now using an herbal product from Germany called Iberogast which seems to be helping me somewhat.  My point is this...if you are handed a prescription for a PPI and/or told to "double it up" when it doesn't work (despite all the lifestlye changes) be very, very cautious and do your own homework.  The side effects from all the PPI's I used were intolerable and screwed up my entire digestive system.  I NEVER should have been put on them to begin with, but so many doctors PUSH them.  I think they must get kickbacks from the Big Pharm Companies.

Anonymous
adelbarb
4/ 1/10 7:55pm

I have also been taking protonix for several years (10) and have never noticed any side effects. I was off for a short period of time and the reflux came back after a day or two and I remembered how upsetting it was. Went back on protonix and within 24 hours was okay. I can't speak to the bone problems since I have never had any with protonix, nor have I had a test to check that out. Not sure what type of a test would indicate this, anyone have any ideas about that? Prior to protonix I used to load up on Tums, pepcid,etc. and only got relief for a few hours!

4/ 2/10 6:31am

I had some GI surgery, and the surgeon told me that some people (and probably me) have proton pumps way up in their esophagus, and that this was the likely cause of my continuing heartburn and my need to be on a PPI. There are no bone problems that I can link directly to taking these meds (I was on Prevacid, but I am now taking Protonix). PPIs are the best thing that ever happened to me (medically).

Stephanie, Health Guide
4/ 3/10 8:08pm

Your doctor can do a bone scan to make sure you don't have early thinning of the bones. The newest research shows that in people over 50 who have been on PPIs for 5+ years are at a greater risk of hip fracture. Greater than 7 years increases the risk of multiple bones. But, this certainly doesn't mean they are going to be a problem for everyone. It is however important to keep an eye on your bones as the PPIs seem to be interfering with bone density.

 

Stephanie

Anonymous
adelbartb
4/ 3/10 10:34pm

Thanks for the information Stephanie. Will contact my doctor. I'm well past the age levels you mentioned. Never fractured a hip or other bones but had a hip replacement.

7/16/11 8:57pm

A bone mineral density test is at least one of the tests that can tell you about the state of your bones.  Get enough calcium and vitamin D - based on the recommendations for your age and gender.

4/ 1/10 9:35pm

I took the PPI, Protonix for three years and a major side-effect that I have experienced is a reduced ability to absorb magnesium and some of the B vitamins.  I have had muscle twitching and musclular cramps in various places that have had to be released by a Doctor of Oriental Medicine.  In two places I had torn muscles.  The lack of B vitamins caused inflammation near my scalp, eyebrows and ears.  Now I have been off of the drug for 5 months and I still get some cramps, but I am able to take oral magnesium to get rid of them.  Before I had the magnesium intravenously.  The skin problems are much improved.

 

I got of the drug by tapering off to every other day.  I did get more severe heartburn than before I took the drug.  During this time I added trace minerals to my water to make my whole system more alkaline.  When I stopped taking the drug completely I took a Stomach Tonic manufactured by Herbs, Etc. once in the morning and a DGL Licorice tablet before the other meals.  These form a gel-like substance and protect the linings of the esophagus and stomach.  Now I mostly just take the DGL tablets when I need them.  I have no reflux and I can eat most anything I want.  I stay away from alcoholic drinks except for the occasional beer or really spicy food. 

 

It is extremely important to get magneisum because a lack of it causes soft tissues in the body to calcify.  These include the heart valves.  Magnesium also reduces the blood pressure and keeps the heart from beating too fast.

 

I would be interested to know if other people have experienced my same symptoms.

 

Kay Belangia

4/ 1/10 11:36pm

I've been concerned about using Nexium longterm also. I'm 67 now. Also wonder whether it caused the heart arrhythmia which I've developed over the last few months. I suddenly have about 8000 irregular heartbeats a day! Have no clue as to why, and it's worrying at times.  I had a bunch of blood tests run and my calcium, magnesium, B vitamins, etc. are fine. Only my ferritin level (iron stored in the body tissues is high, and that will have to be monitored carefully so I don't have organ damage.)

 

Four months ago, I cut my dosage of Nexium from 40 mg a day to 20 mg a day (tapered down and didn't have too much trouble). Last month I tapered to a 20 mg capsule every other day and just used Mylanta if needed on the days I wasn't taking Nexium. So far, so good.  I just eat more carefully and eat less. My doctor thinks I should stay on a PPI, but I may continue to try to taper off more in a few months.

 

 Ranitidine gives me bad stomach aches, so don't want to try that again. Already tried that. Most PPIs give me headaches and make my irritable bowel issues worse. That's why I use Nexium. I don't know why Nexium works better. Doesn't make sense to me. I wish it cost less, that's for sure.

 

I'd be very interested in knowing how others have tapered off of PPIs. I don't seem to be able to use H2 blockers such as ranitidine (generic Zantac) either. Advice, anyone? 

 

 

Stephanie, Health Guide
4/ 3/10 8:28pm

Have you tried any of the other H2 Blockers such as Pepcid? I agree that it doesn't seem to make sense why one med works for one person and not for another. I too would worry about the irregular heartbeats and would want to check all of the possibilities. I know that my cardiologist has recommended Magnesium for my palpitations despite my Magnesium being within the normal range. You might want to ask your doctor about this.

 

Best of Luck - Stephanie

4/ 4/10 5:47pm

Hi, Stephanie,

 

As I was reading these posts (especially yours), I got a flashback!  I have been suffering with GERD for 2 years and tried most H2s and PPIs to no avail.  I did give Nexium 6 months, but was miserable most of the time, experiencing indigestion and intermittent heart palpitatations.  I went off the Nexium cold turkey and did have rebound reflux, but would tough it out any day rather than continue on these meds. 

 

GERD itself can also trigger palpitations.  Please read the posts on WebMD re "GERD Causing Heart Palpitations".  You will find so many posts on that topic.  As for my regimen now, I've lost weight (about 9 lbs.), watch what I eat (less fatty dairy), and sleep on a specially designed slant pillow.  I still take DGL when needed, and drink very alkaline water, along with a more alkaline diet.

 

Good luck to you and all who are weaning off these drugs.  They were never meant for long term usage......

Anonymous
Paula
4/25/10 8:25am

I have been on Nexium for almost 10 years until Jan, 2010.  I was having terrible heartburn, acid feeling in my stomach, etc.  My doctor told me to double up on my nexium.  A few months later I had a major pain attack, which we thought was my gall bladder.  I was having chest pain, back pain, pain in my diaphragm, etc.  I stopped the nexium and all of my pains went away, except for the right side pain, which after having many tests done that were negative.  I went to see a surgeon and he said that some of his patients have gall bladder symptoms with negative tests and when he goes in and takes the gall bladder out...it is either diseased or has stones, or is not functioning properly.  He left it up to me to leave it or  take it out.  I am opting to taking it out because of the pain and possible taking care of my hiatal hernia, which he thinks is causing my reflux. I have 3 boys and I just want to feel good.  And I can't help but think that the long term use of nexium caused some of these problems.  If doctors are going to keep their patients on Nexium long term, how come they don't have studies on long term use????  I would love to have an answer to that question!

4/27/10 8:43am

Hi, Stephanie...

 

Since cutting back on the Nexium (now at one 20 mg. Nexium every other day), the only thing I notice is that my irritable bowel is a little bit more troublesome. 
When I first started taking a PPI (whether Protonix, Prilosec, or Nexium), my food went through much faster and I'd head to the bathroom several times a day.  Eventually, it straightened out. Now I seem to have the several-trips-a- day some days and other days I'm somewhat constipated. It probably from reducing the Nexium, don't know. Also have more gas and bloating than before.  So, I'd like to know how long to stay on the 20 mg of Nexium every other day and what to do next. Maybe take the Nexium every third day? And how long to wait before I try this?  Has anyone out there tried that?

 

I did have a mild bout of reflux last evening (no Nexium that day) and took a Mylanta tablet. It went away. Seems to work well for me and it's one of the few tablets of that type that contains calcium and magnesium (about 2:1 ratio, I think, or close to it).

 

I also take about 800 mg of chelated calcium and 400 mg of chelated magnesium a day, along with low-fat dairy products. I'm not sure if it helps with the heart arrhythmia or not yet, but my cardiologist said it's worth a try. He said to go easy on the magnesium because it could cause loose stools, something I don't need with irritable bowel problems.  At least I don't get palpitations (strong or fast heartbeat) a lot.  But the heartbeat skips can make me tired and make me cough.  Paradoxically, the skipped beats actually lessen if I exercise just enough to get my pulse up to the mid eighties or above. When I had a treadmill test, there were very few skipped beats. This is fairly common.

 

I'm not taking any meds for the arrhythmia, because beta blockers will slow my heart down too much and lower my blood pressure. I already have a relatively slow pulse and blood pressure on the low side. I tried a beta blocker once for migraines, and it made me feel like a zombie...very low pulse and blood pressure...couldn't even go to work. So, just trying whatever I can to keep the heart skips from getting worse so I can avoid surgery. Some people have them for many years and the stay the same.  Others find the situation gets worse and they need surgery. Hoping I can avoid that. It's no picnic.

 

This is rather long (sorry). But if any of you have tapered off Nexium as I have, I'd like to know when and how much to reduce the dosage some more and eventually get off it. I do know that I really did  have acid reflux damage, because I had the endoscopy. It seems fairly well under control as long as I avoid the trigger foods.

 

Thanks for any help you can provide.  Sounds like there are a lot of us dealing with this nasty problem. 

Stephanie, Health Guide
4/27/10 5:36pm

Well the good news is that while you are tapering you aren't having significant issues with reflux. That's awesome!

 

As for how to taper. Unfortunately no one really knows. In general they say it takes a good two weeks for your body to adjust. I know that I can feel a difference almost immediately when I make a change and then it takes a while for my body to catch back up. Eventually, you will be on such a low dose that you can just stop. Being at every other day you may already be there but you could try every three days. What has your doctor said about this? Do you have anyone overlooking all of your meds? It's really hard when there are multiple issues going on and multiple docs involved. 

 

The calcium can cause constipation so it's a balancing act with the potential diarrhea from the magnesium.

 

Have you tried any of the medications for irritable bowel? I don't know much about them but if it becomes the bigger issue.... Plus, if you get constipated you are much more likely to reflux simply because the plumbing below is clogged up.

 

Stephanie

Stephanie, Health Guide
4/27/10 5:44pm

My Mom had right sided pain for years. Eventually she wound up with an ulcer in the beginning of her intestines (duodenum) and was put on reflux meds. She's been on them for over 25 years now. She started with Zantac and Carafate and eventually moved to PPIs. But, the right sided pain never fully went away. They would test her gall bladder and everything would come back within normal limits. Finally they did a HIDA scan and found out that it wasn't functioning properly and they took it out and lo and behold the pain is gone.

 

But, you do have a great question about why would they allow us to take it for so long if it hasn't been tested. So many of the medications we use are used in ways that they weren't originally tested for. Most meds aren't tested on children because there arent' a whole lot of parents willing to try them on their kids. So, they have to make "guesses" about how it will work with children. Also, what happens is that once a med is working well for the time period that it's meant for then people keep using it. And, then it becomes anecdotal meaning the doctor's experience is that it's okay for longer periods. This is considered normal practice and we wouldn't know what we know if they didn't do it this way.

 

For example, there is absolutely no way that every medication can be tested against a new medication to make sure there aren't going to be interactions. So, when a weird drug interaction occurs the results are reported and people look for trends. Once trends are noticed then the safety is re-evaluated.

 

This basically makes us all guinea pigs. But, the US is actually more cautious and requires more testing than most countries. So, while it stinks that any of us could be the one to find out about a bad interaction -it is a fact of life. If we're going to be willing to accept a med for it's possible side effects we have to realize that they've done the best they can to keep us safe. (Granted there are some pharmaceuticals who are probably dishonest and fake their data or hide bad results but those are the ones who get sued).

 

Stephanie

4/27/10 11:43pm

Hi, Stephanie...

 

For irritable bowel problems, I've had pretty good luck taking a Fibercon capsule and a culturelle cap (a powerful probiotic) with my evening meal.  That has resulted in a more formed stool and daily bowel movements most of the time. Before I took those, it was much worse. I can actually eat a salad now, plus an occasional small serving of baked beans, broccoli, or other foods that are reflux friendly. I think that Culturelle has been the most beneficial. My food choices were really limited before I began taking it about four years ago. Those are the only things I take for irritable bowel problems.

 

Reflux is a bigger problem for me. I have to be careful tapering, yet I need to try to take as small a dose of a PPI as possible. A real challenge. 

 

 

Anonymous
Paula
4/28/10 7:06am

Stephanie,

Thanks for the info...I will be getting my gall bladder out on June 2nd and might possibly be fixing my hiatal hernia also with laparscopic surgery to hopefully alleviate some reflux symptoms.  I'll keep you posted!!

Anonymous
lorna
12/30/10 3:21pm

Hi, How long di it take to waen off the ppi meds?

Stephanie, Health Guide
12/30/10 3:40pm

I took mine at a half strength for two weeks and then I went to every other day for two weeks. I then used anti-acids at the same time. When I seemed to be having more symptoms I switched over completely to Zantac. I have since switched to Pepcid.

 

Stephanie

12/30/10 9:19pm

Hi, Lorna,

 

Quite honestly, it's been well over a year since I've even touched any acid reducers.  I stopped Nexium cold turkey and the medication was in my system for at least a week afterwards.  I did have some rebound reflux, which I anticipated, but once I got through that, I was fine.  I have had fewer reflux episodes which were farther and farther apart and my recent endoscopy revealed a hiatal hernia, but no ongoing progressive damage.

 

Good luck to you.  It is my opinion that these drugs did not help me at all with my condition, but only compounded the problem with a host of other side effects.

Anonymous
willow
5/ 1/12 10:24pm

I have irratable bowel and I am having a real hard time taking the ppi's tried every one and they cause a burning in my colon and make me sick.  but if I cut back i have the reflux symtoms.  any ideas.  thanks

4/ 2/10 9:45pm

...I'm 73 and have been taking Omeprazole once a day for several years and they've been very effective; however, I've just had two stents put in and am taking Plavix.  My cardiologist switched me to one Ranitidine a day; it wasn't as effective as Omeprazole, so he increased it to one in the A.M. and one at night...and as long as I take them before meals, rather than after...and twice a day, I have little or no heart-burn and it's as close to Omerprazole results as I've been.

Stephanie, Health Guide
4/ 3/10 8:29pm

That's great that you are doing so well on the Ranitidine. I don't think I mentioned the Plavix issue in this sharepost but you bring up another reason why some people are having to go off of PPIs.

 

Thank you - Stephanie

5/ 4/10 10:41pm

I was first diagnosed with Gerds Jan. 1, 2009 after going to the hospital the night before thinking I was having a heart attack. I was put on Prilosec and took for over a year. Everytime I would try and go off of the med, I would get really sick, go to the Doc and was told to increase meds..take two a day. My symptoms were anxiety, feeling so tired with no energy at all, heart racing, jittery, muscles sore, etc.  I can't tell you how many EKG's, Chest X-rays I have had last year and this year so far. January 2, 2010 I was so sick and returned to the Doc. I was bleeding from rectum. Referred to a Gastrologist and had ischemic colitis and was told it was a one time thing and would never happen again. Stay on meds for Gerds, per Docs. Feburary this year I had a middle ear infection and was put on antibotics for 14 days along with staying on Prilosec. I have had a stiff neck since Feb., muscle soreness in chest and shoulder blade, morning stiffness, anxiety, jittery.. so I cut back on caffeine. I went off the meds for two weeks and feeling really bad again with symtoms really intense and everything I ate killed me, shortness of breath and bloated. Went to Doc and now I have a Vitamin D deficiency and my glucose is elevated. Doc switched meds to Protonix. I am scheduled for a endoscopy next week, had a ultra sound of stomach done today. I am really stressed about PPI's and do not want to stay on this the rest of my life. I want to feel good again and I am really concerned that these meds for Gerds has made me worse and causing all these problems I am having? If anyone has any suggestions or advice, I would appreciate any feedback. Help!

3/ 6/11 12:52pm

I had a Bravo capsule test which said that I do not have acid reflux contributing to my throat itching drainage issues. But an ENT examination said that I had reflux on my larynx. Now the Gastro doctor explains that he meant that acid reflux was not the "predominant" issue. Quite a qualifier from the written results of Bravo. And this was a MAJOR gastro doctor, chief at a leading hospital


So I still have terrible gagging, dripping in my throat etc. and caught between two specialties.

 

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By Stephanie, Health Guide— Last Modified: 05/01/12, First Published: 03/29/10