# Duration of Protonix use?



## SaraCC (Apr 24, 2001)

I have been taking Protonix for about 1 1/2 years now, after being diagnosed with GERD. I am no longer seeing the GI specialist who diagnosed me. This particular doctor was not very helpful with questions anyway, due to his appointments that last about 5 minutes and then he's out the door.My question is: How long are you supposed to stay on Protonix, or other similar medications? It is working good and doing its job, but I read on a drug website that it is intended for short-term use in healing the lining of the esophogus. Is this true, or is it okay to take it for years at time? Are there other medications I should be using for the long-term? I am 23 and know I will probably need something to use for the rest of my life.I will ask my primary care physician the next time I have to visit her for something, but am curious if anyone else might have advice about this.


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## slacker (Mar 23, 2002)

I beleive its no more than 12 weeks and then you get reevaluated and if you still have like an ulcer or something you can do another 12. The only time it should be taken long term is for Barrett's. Yes, the doctors just throw a pill at you and walk out the door. Try to wean yourself off the pill, decrease your dose/frequency if you can, and take zantac or pepcid and liquid antacids. Try not to give in if you don't have to, but if you do, take 1. If you are taking 1 per day, try 36 hours instead of 24, or if you are taking 2 or every 12 hours, try 18 hours. I got myself off in about a week, the rebound reflux was bad but I took the otc stuff and only gave in once or twice. Felt a Hell of a lot better after a week, totally off the $hit. That stuff is bad news, get out while you can.


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## silver (Dec 21, 1999)

I dont know if I agree with you slacker but if you have GERD you can stay on it for a long time. I have heard of some people taking it for 10 years or more. I've been taking it for about 3 years now and I cant even skip a day, I get major heartburn, chest pain. I cant take zantac or pepcid because I have to take like 5 or 6 a day and it still doesnt work that weel, I'm still in pain. The doc says it is ok to take it longer. I think alot depends on your symptoms and your doctor.Check with your regular doc and get his/her opinion. Another thing I have heard on the news is that zanctac/pepcid can cause esophageal cancer so thats not good either. I know diet is important but thats not the answer either and I dont know the asnwer I'm just saying what I'm goin thru and without my protonix (pantoloc in Canada) I'm in severe pain.


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## SaraCC (Apr 24, 2001)

Although I have changed my diet drastically since diagnosed, I am still afraid that my esophagus will become damaged again if I go off medication. I am assuming that my much-improved health is a sign that the damage I had has healed or has gotten better. I do still feel the reflux into my throat/mouth on rare occasions, and worry that this will become common without medication.My insurance covers most of the cost, so price isn't really an issue with me. My concern is that using Protonix (or another med) will cause damage in other ways.I have tried Pepcid, AcidPhex, and a few other OTC meds. My doctor okayed these as occasional backups to my Protonix, when I have a flareup and need double-coverage. They work great as a backup but don't seem to do the trick as a primary med for me.Doctors love to throw meds with no explanation...the doctor actually gave the Protonix to my husband while I was still "out" from my endoscopy/colonoscopy. He couldn't wait to talk to me after I woke up I guess. My follow-up visit wasn't much better. He said I no longer need to see him, which may be a blessing. I am going to check out some health care facilities in nearby cities to see if there are any other GI specialists in the area. All of the little information I have is from the manufacturer's website. Hopefully my primary doctor will have some more insight, or can direct me to a better specialist.


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## silver (Dec 21, 1999)

Sara, I am in the EXACT position that you're in







and it really sucks having to depend on PPI on a daily basis.Sadly enough, the doctors dont know the effect of long term PPI because it hasnt been around long enough. My next step is having the Nissen fundoplication wich I am in the process of figuring out if I am a candidate or not. I still dont know if I'll go thru with it or not. But in the meantime I dont worry about taking the protonix (pantoloc) because I cant live with all the pain anymore from skipping one dose.If you get some answers please let me know.


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## SaraCC (Apr 24, 2001)

Nissen fundoplication - is that the procedure where our LEM is scarred with a laser in order to toughen it up and prevent reflux? Or am I mistaken? I heard about the procedure I described but don't know the name for it. It sounded interesting but I know it's not too commonplace yet.


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## silver (Dec 21, 1999)

Hi Sara, the Nissen fundo is when they wrap your stomach around the lower part of your esophagus. It had 90 % success rate.I have never heard of the procedure you mention but would like to learn more about it. Do you know a website where I could find more info on it?


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## SaraCC (Apr 24, 2001)

I actually saw a news story on my local news about it. It was an interview with a Canadian doctor who was working with this procedure. The procedure itself is relatively new and is not being commonly used right now. The doctor said that in a few years it may become commonplace, if tests continue to have positive results.Because the procedure isn't being commonly used, I have researched it yet but may start looking online for more information. I do not have the money to travel for medical procedures, so I wouldn't be able to have it done unless a doctor near me started doing it. There was no mention of risk factors and of course long-term effects are not known yet. If this becomes available in a few years, I will seriously look into it. If I do find any more information, I will post it.


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## slacker (Mar 23, 2002)

> quote:I dont know if I agree with you slacker but if you have GERD you can stay on it for a long time.


It's not about whether you agree or disagree with me. I'm not pulling this out my ass, this is the "rules." I KNOW some people stay on it for longer. You are not SUPPOSED too. The drugs haven't been tested and approved for that.


> quote:The doc says it is ok to take it longer. I think alot depends on your symptoms and your doctor.


"The doc" says a lot of things. Depends on your doctor? Yeah, your right, it does. A Doctor who is following the rules will want you off of it. Don't believe everything a doctor says. Some of them only know what they've read, and some of them don't read.


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## silver (Dec 21, 1999)

Slacker, I'm not here to argue with you. Doctors dont know either way. Some let people stay on it, some dont, it all depends on your symptoms.I've tried to get off it times & times and its impossible. I miss a day and I suffer big time and have to take 4 times the recommended amount for zantac or pepcid, now thats not much better.I know the PPI's came out for 2 months cure of ulcers but things can change too and some people need longer treatment.If the drugs havent been tested for long time use then they cant say its not safe. Rules can be broken. Because one stays on it for a long time doesnt mean its not safe.And I do trust & believe my doctor. He has tried to get me off it and I want too badly, thats why I'm looking into the surgery. We are all react differently to drugs so nobody really knows the answer to what is safe long term or not.Dont try to make people feel worse then they allready do.


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## slacker (Mar 23, 2002)

> quoteoctors dont know either way.


That's my point.


> quote:Some let people stay on it, some dont, it all depends on your symptoms.


A doctor letting you stay on it or not letting you stay on it implies neither that its safe nor unsafe.


> quote:I've tried to get off it times & times and its impossible. I miss a day and I suffer big time and have to take 4 times the recommended amount for zantac or pepcid, now thats not much better.


I, too, had a hard time getting off of them. It took almost a week. Once I was off, I felt better taking just taking Maalox than I ever did on the stuff. Now I don't even take that.To get off you need to stick it out. Start taking the PPI less often, then take the OTC stuff and maalox, eat extra careful, and slowly decrease the meds as you can. Its gonna suck for awhile.


> quote: I know the PPI's came out for 2 months cure of ulcers but things can change too and some people need longer treatment.


Does your heartburn seem to be worse, when you don't take the PPI, than before you ever started? According to the current lit, in layman's summary, these pills reduce your stomachs ability to "handle" acid in the long run. That is why the only time the benefits are believed to outweigh the risks are serious conditions like Barrett's and cancer. Assuming your ulcer/gastritis, if you had it, is healed, and you can't get off these pills, you need to get reevaluated for the underlying cause. There are many causes of reflux. In my case, it ended up being extremely delayed gut emptying.


> quote:If the drugs havent been tested for long time use then they cant say its not safe.


That's flawed logic. You got it backwards. If they haven't been tested long term, then they can't say they ARE safe


> quote:Rules can be broken.


This "rule" should be broken only if the benefits outweigh the risks. Need to get re-checked.


> quote:Because one stays on it for a long time doesnt mean its not safe.


Correct. Unfortunately, there are many documented cases of problems with the PPIs long-term, which is not to say that you will develope them, but once again, the benefits need to outweigh the risks.


> quote:And I do trust & believe my doctor. He has tried to get me off it and I want too badly, thats why I'm looking into the surgery.


Yeesh. I hope you aren't talking about fundoplication. Please read up on that and consider the alternatives.


> quote:We are all react differently to drugs so nobody really knows the answer to what is safe long term or not.Dont try to make people feel worse then they allready do.


Certainly not my intention. I don't know how you came up with that. This board is for support and/or information, and that is the nature of my post.


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## silver (Dec 21, 1999)

Belive me if I could I would stop taking it. I did go 7 days a while back and it got so bad that I lost 5 pounds that week and I was drinking maalox, gaviscon by the bottle, taking 8 pepcids a day and was still having heartburn. I did get re-evaluated, got the scope and they found gastritis & H.pylori. I took the treatment for h.pylori and I'm still having gastritis when I dont take the PPI. The surgeon is doing further test and is the one who suggested the nissen fundo, if I am a candidate. Otherwise I do not know what to do to get off this stuff. Believe me, I do want to stop taking it for many reasons. But the thruth is I CANT. I have read all the stuff you talk about but I have no choice right now. I cant even sleep at night when I dont take the PPI, thats how bad the pain gets in my stomach, and doctors dont give me any other alternative besides the surgery.I think that taking PPI is better than getting barretts is I dont take it. Having heartburn is not safe either so what is the solution? Please dont say diet cause it just dont work for me. I get heartburn when I get up in the morning before I even eat or drink anything.Have you heard if drinking aloe vera juice is safe and effective?


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## DavidLA (Nov 28, 2000)

Hi Slacker & Silver,- You mentioned two words I found very very interesting..UNDERLYING CAUSE--I'd like to repeat those two magical words UNDERLYING CAUSE--I just love to read & hear those two magical words.Because..After 20 years of IBS and two years of Acid Reflux--Those are two words that should not be used with IBS or Acid Reflux. I Believe thats exactly the problem when you go to a Traditional MD..they don't look for the underlying problem/Don't know the Underlying problem & have NO CLUE of the UNDERLYING problem!!!!..only the RESULTS of the Underlying Problem. They want to give you the PPI's..which you have to take every f** day & does nothing for the cause or surgery..where there wrapping part of your stomach around your esophagus. I also took a PPI ( Prilosec) for seven weeks. Made my acid reflux much worse & would never take them again. I completely understand want Silver is saying..the pain you go through is horrible when you stop taking them!! but it is possible to slowly get off them. Drinking aloe Vera Juice definitely helps, I found digestive enzymes helpful, also eating tons of cooked vegetables( with each meal if possible) helps. Probiotics before meals is helpful..my acid reflux has gotten much better .I hope your does too. Good Luck!!


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## SaraCC (Apr 24, 2001)

Does anyone know of someone who has been on PPI's for a long time, like maybe 10 years?Isn't it true that the underlying cause is a dsyfunction of the body in ways that are not "caused" by anything? This is essentially what IBS is; your bowel does not function normally. IBS can be genetic, as it is in my case. There is no way to "cure" IBS. My doctor said that GERD often appears in young adulthood (as with me) but nothing I did "caused" it. It was simply something in my body's makeup that would happen regardless of what I did.Which leads back to the real question: How to treat or manage it? DavidLA, I took a PPI (Prevacid) that made things worse, much like your experience with Prilosec. My concern with not taking a PPI is that my esophagus will become damaged from the acid reflux again and will develop Barrett's, or worse. If I don't take a PPI I will likely get worse again. Diet has helped me in addition to the medication, but I don't feel that diet alone would take care of the problem. I haven't tried aloe juice so that may be something to try. I mostly try to drink lots of milk. Are there any long-term studies on the effects of OTC meds out there?


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## DavidLA (Nov 28, 2000)

Hi Sara,-Yes..My Mom has a friend who has been on prilosec/nexium for over 10 years..shes at the point where she can't even miss 1 dose without having terrible burning. When the acid does come up now..the intensity is 10x greater than before she ever got on it. That's the problem with the PPI's. What I find very interesting is that in the last 10 years there has been a huge surge in Esophagus Cancer. A connection with the PPI's??? Who knows??Regarding your post on IBS..I know at least a half of dozen people who were diagonosed with " IBS" told they would have it for life, blah, blah, & there now fine..Remember "IBS" is simply a catch-all term..if you go to the Doc. & tell him you have chronic pain, bloating, c, d, or both, & all the tests look normal..I think you know what he's going to tell you..I.B.S. & good luck!! Regarding the acid coming up?? Yes, if it keeps coming up & burning your esophagus you could have problems but even if you took pepto bismo, or tried some of the natural products.its alot better I think than taking the PPI's everyday. Theres tons of products to experiment with..finding the right Combo is the key!! Mine starting easing up after about 2-3 weeks..there was a bigdifference in the intensity. As you know the PPI's aren't suppose to be long term..its up to 8-12weeksI believe. Stomach acid is a vital part in your overall health. I was told by one Dr. that it has over 15known functions. Not counting the ones we haven't even discovered yet!! Remember the stomach acidnot only helps you digest protein, but also it protects you against bacteria's/parasites in the foods & beverages you consume. I know the first few weeks without them is HELL but it does ease up. Have you ever had a monometry test done?? or a PH Test done?? or a E.G.D. Scope done?? These tests willgive you an idea how bad you reflux is. Good Luck..


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## slacker (Mar 23, 2002)

Oh Hellll no I won't give you any #### about diet. I too had it on an empty stomach. I had it perpetually, food or no food. This was ON the PPI's, twice a day. I have tried them all but was on Prevacid lastly, which is supposed to work for 24 hours. Stupid doctor had me on it twice a day. I know that did some damage. Been through all the stuff you are going through, and it is horrible. Lived on plain noodles ,bread, and mashed potatoes for weeks. I had a revelation that the stuff wasn't doing jack and thats why I resolved to get off. Took it every 18 hours instead of 12, took Pepcid for rescue use, and sucked Maalox. Went from there after a few days. You gotta get off that #### sometime, man, might as well be now. Only gets worse. After your totally off for a few weeks, you will be glad you did. PPI's are a band-aid pill that when used for a chronic problem, obstruct and obscure a correct diagnosis, and allow the underlying problem to worsen. Mine ended up being delayed emptying, which is why the PPI's didn't help. Only med that made a difference was maalox. Instead of refluxing food and acid, I refluxed neutralized acid, food, and maalox. Yummy. You are right, its better than Barrett's, but fortunately you aren't there yet. I don't know about aloe Vera juice, but I personally found Milk to be quite effective for putting the fire out, if you can tolerate it. Sucky situation but what can ya do. Fundoplication has a very high failure rate down the line, and sometimes leads to uncool problems like inability to belch or vomit. I don't even wanna think about what that would be like. Id rather go back to puking acid and sipping milk.


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## 16331 (Dec 14, 2005)

What if you've been diagnosed with Barretts thru a EGD ?My GI doc told me I"d be on them for Life !Since I've been on them, my symptoms have increased and also my IBS. The Barretts scares me, so I don't know what to do.


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## 19331 (Jul 21, 2006)

I also was recently diagnosed with Barrett's. I was diagnosed with GERD in 1999. Unfortunately, I have been on PPI's for 7 years and it still progressed. Recently diagnosed with Barrett's, Hiatal Hernia, chronic gastritis and bile reflux. I will never come off PPI's to much risk and pain.


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## madge (Oct 1, 2006)

Silverid you say, in one of the earlier posts on this thread, that Pepcid and Zantac can CAUSE esophageal cancer? I've been on Prilosec for a few months and my doctor feels I should try generic Zantac (ranitidine) 2x a day, and eventually wean off to just as needed if I can. I have troublesome side effects from the Prilosec (IBS-c) Where did you hear the Zantac could cause cancer? Now I'm really scared to go on the Zantac if this is true. I'm pretty worried.


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