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Who out there is on a double dose of PPI?

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Posted 4/19/2007 1:39 AM (GMT 0)
Hello:  I had mentioned earlier I wasn't going to take my Nexium to try and wean myself off the drug.  I am on the DGL since Saturday but don't know how well it is working.  So today I had the bright idea and didn't take it and I had a horrible day with lots of reflux.  I was upset because I saw my gastro doctor yesterday and he still wants me to keep taking the Nexium 40 mg twice a day for at least four months.  I have been on this drug for over 8 weeks and it is taking forever to really kick in (I had been on Protonix for about 7 months but rendered itself useless) and have been struggling since.  I am wondering how long this is going to take?  I have been to hell and back in a handbasket for almost 4 months (sorry I am venting, just my frustration).  I am following all of the rules and am vigilant with my diet.  I was in pretty bad shape but I don't understand why I still get some reflux if I am following all the so called "rules".  My gastro even said it was "impossible" with the dose I was taking to still get reflux since it has been over 8 weeks.  Some days are ok and some are terrible and my stomach feels weird like if it is really hot inside and when I exhale my breath I feel like it is hot.  I hope this makes sense and does anyone feel a sensation like this?  The doctor said stress is causing my gerd and I said I know it probably is because I am frazzled that I can't seem to get better in four months.  I would appreciate any input.  Thanks.....
Posted 4/19/2007 6:20 PM (GMT 0)
I'm also on double dose, 40mg AM and PM. I actually started doing that on my own because the Nexium just didn't seem to work that well and was well worn off long before bedtime. My doc at first didn't want me on that much, but then checked with another doc in the practice who said absolutely take 80mg. I'm seeing a GI doc today so will see what she has to say. I've been on the Nexium about 6-7 weeks and finally I 'think' there may be some relief. I hate to even say that out loud because tomorrow it can all flare up. I seem to have really good days and really bad days...not many in between. I had a good day yesterday but then last night, going to bed even 5 hours after eating, I got reflux when I tried to lay down, so I had to sleep very propped up. I end up waking up flat on my back, so apparently I'm tolerating being flat at night while asleep. I'm really hoping for some answers today at my appointment. Then I have to go out of town on business this weekend and praying that I can keep it under control, both the GERD and the anxiety.
And NO, there is no way it's impossible to get GERD on 80mg for 8 weeks..most days I've got it too, REALLY bad and I've changed my diet and my lifestyle considerably in the last 7 weeks.
Good luck - this is miserable!
Posted 4/20/2007 12:21 AM (GMT 0)
I don't trust doctors. period.

Posted 4/20/2007 9:37 PM (GMT 0)

Porcelain doll,
Sorry to hear about your severe reflux.


PPI strongly inhibit gastric acid secretion, but some amounts of acid are still necessary for digestion. So it is possible (as KarenG mentioned) to have reflux on high dose of PPI.

The main cause of reflux is abnormal function  of the esophageal sphincter, a muscle located at the bottom of the esophagus where the esophagus joins the stomach. Surgery wraps the upper part of the stomach around the esophagus in order to prevent reflux. It may be a reasonable alternative when reflux is not controlled by PPI.

Surgery is never the first option, but you may discuss with your doctor what is better for you. Surgery success rate is about 85%.

Posted 4/21/2007 2:30 AM (GMT 0)
I really wonder why surgery is not considered more often. I have done a fair bit of research on this and 85% success with no PPIs and a less restricted diet sounds very good to me. That said, the news on surgery is not all good. This is the most pessimistic report on it: http://www.fpnotebook.com/GI261.htm

Even this report (which is generally negative) suggests surgery has advantages over long term use of PPIs. In addition, I found this abstract on fundoplications success in combating extraesophagael problems (i.e. asthma, cough, chest pain, throat etc): http://www.ingentaconnect.com/content/sesc/tas/2006/00000072/00000003/art00002

I'm not saying surgery is for everyone - it certainly isn't - but it should be a very strong consideration for everyone who has a damaged sphincter. My lingering concerns are about how easy the surgey will be to redo if there is a problem.

Please feel free to comment. I'm suffering and still in Gerd hell so feedback is really appreciated.
Posted 4/21/2007 4:25 AM (GMT 0)

Dear Christo:  I too am in Gerd hell!!!! I had asked my Gastro doctor about the surgery but he said in my case absolutely not.  He said I was too young (43 years old) and that with the surgery I could have many more problems and side effects.  He said the surgery is only the last resort until you have exhausted all other measures.  I have been on the double Nexium dose over 8 weeks and as I write this post I am experiencing terrible heartburn pain that won't subside.  I don't know when this medicine will kick in.  It is very frustrating because I am following all of the Gerd rules but to no avail I am still not any better.  I had a really bland dinner tonight and the way I feel right now you would think I had eaten a spicy Mexican/Italian meal (my favorite).  I can only dream of the days when we can eat something good. tongue Good luck, Porcelain Doll....

Posted 4/21/2007 5:16 AM (GMT 0)
Dear friend, Your youth is on your side and a very good reason for having surgery. Please get a second opinion. It's almost as if some Doctors have shares in Astra Zeneca :)

Also question your doctor on the side effects? You might not be able to burp and will be in bother if you want to vomit. However, my understanding is that is it. In my view, these side effects are worth it. In time, you will be able to have your favourite Mexican/ Italian meal again. You will live to live rather than live to avoid death.

I did a urine test yesterday which showed I had no protein or sugar. I wonder if this a side effect of the PPI. In addition, no controlled study has been done to counter the argument that PPIs might cause cancer in the long term.

I really wish you well and be sure living in Australia i have nothing myself to gain by advocating surgery. I really believe it's the way to go, but I also have to wait 10 more months in my gerd hell before doing it. And while i wait, it's great having friends to chat with.

i would urge everyone to do their own research and post (if not a breach of copyright) any published papers on the effectiveness or otherwise on surgery.

Please keep well.
Posted 4/22/2007 2:58 PM (GMT 0)

please just a few week and u will be better

i was taking 80 nex

the first 9 week i was having very bad pain ,and now every week it is better and better u have to wait a few days/weeks

Posted 4/22/2007 8:29 PM (GMT 0)
Thanks to all who commented on my thread.  I think Sultan is right on it takes time for the medication to work.  I am barely starting to notice a little relief from the Nexium but it has literally taken forever.  I have my days.  For example, Friday during the day was good at least I thought but Friday night I had a horrible night with lots of acid breakthrough and couldn't sleep.  Today my day has been ok.  It is hard to be patient when one feels so horrible and just waiting for the medicine to kick in.  I have learned alot by reading this forum and it seems we are all in the same boat. 

Posted 4/24/2007 12:43 PM (GMT 0)

It is possible to have nonacid reflux.  I certainly do.  I take a double dose of aciphex, and have for years.  When I take my meds, I have minimal acid reflux (although breakthrough acid is common); however, I still have reflux.  PPIs take care of the acid production, but they don't do anything for actual reflux.  My reflux does travel up to my esophagus and messes with my voicebox; I am constantly clearing my throat.  The only thing that helped with the actual reflux is reglan--it forced my esophagus to contract correctly to prevent my stomach contents from travel upwards.  Short of surgery or drugs like reglan and propulsid, I'm not sure there's a whole lot that can be done about nonacid reflux (bile reflux).

El

Posted 4/24/2007 9:02 PM (GMT 0)
 

Be super careful with the reglan or its generic form.  I ended up in the emergency room last week with horrible, painful facial spasms.  My jaws were twisted, the teech clenched, the eyelids pulled up, forehead wrinkled, etc.  I though that I might be having a stroke.

I've since heard a doctor say that she would never prescribe it again.  My doctor had said 4 pills daily.  I had two pills within 4 hours of each other.  That caused the problem.  Never again will I take it.  Be very careful.  My teeth did not fully go back into proper position.  This is a well-known side effect. APG

Posted 4/30/2007 5:09 AM (GMT 0)
I don't know if it's similar stomach emptying enhancer,

I took some motilium and levosulpiride for couple months and had severe abdominal pains.. i went to the doctor and he told me my pancreas could be inflammaed or damaged.

I went back to pure nexium + dgl + PM 10mg of famotidine.

it keeps evertyihng under control.
Posted 5/3/2007 5:40 PM (GMT 0)

I agree.  I took reglan for 8 months!  No one, including the doctor who prescribed it, told me it was only supposed to be a temporary drug.  And his office just kept refilling the prescription.  I was finally told by a primary that I shouldn't be taking it anymore.  It did work, but it can be a potentially toxic drug, as some of you have shared. 

Elcamino

Posted 5/22/2007 8:43 AM (GMT 0)
I'm 18 and have been on nexium for over 3 months.  For the first month or two my symptoms got slowly better but one morning i woke up and everything changed.  All of my old syptoms came back and now they are slowly getting worse even though im still taking two a day nexium.  Im in a really bad situation because i have lost 30 plus pounds and need to gain weight but i still have to avoid things which are bad for reflux.  I had an endoscopy and they found nothing wrong except for some small signs of reflux.  Im at the point now where its so bad i can even swollow normal food so i have been drinking smoothies and eating soup which isnt great for my weight gain problem.  Anyway im new on here and just wanted to put my situation up.  I personally don't think the nexium is doing anything for me and want to explore other options.
Posted 7/23/2007 3:41 AM (GMT 0)
Doctor told me 4 months for relief.DEB
Posted 7/23/2007 4:30 AM (GMT 0)
I was taking 40mgs of Nexium and it took 8 weeks to kick in, but when it kicked in I had a horrible dry mouth and all sorts of weird things, like pains in my jaws, throat, teeth. They were treating me for what is called (silent reflux) you have it at night and don't realize it, but when I would wake-up in the morning I would cough up mucus and my sinsus were all stuffed up. I quit the Nexium and had to because I started having acid reflux. When I did that I had a rebound and was really miserable for about a week. I'm still having problems, but I do get relief. I hope I can stay off the pills. Maybe just try an otc antiacid. Hope all of you find the answer your looking for. Dee
Posted 7/23/2007 4:32 AM (GMT 0)
I was taking 40mgs of Nexium and it took 8 weeks to kick in, but when it kicked in I had a horrible dry mouth and all sorts of weird things, like pains in my jaws, throat, teeth. They were treating me for what is called (silent reflux) you have it at night and don't realize it, but when I would wake-up in the morning I would cough up mucus and my sinsus were all stuffed up. I quit the Nexium and had to because I started having acid reflux. When I did that I had a rebound and was really miserable for about a week. I'm still having problems, but I do get relief. I hope I can stay off the pills. Maybe just try an otc antiacid. Hope all of you find the answer your looking for. Dee
Posted 7/23/2007 1:06 PM (GMT 0)
Hi Porcelain Doll,
I hope things have gotten better for you and all the other GERD sufferers. I too have been on PPI's in double dosage and still exp reflux. I tell ya, it sometimes appeared that maybe the double dosage was part of the problem. I recently stopped my double dosage of Prolisec and went back to one a day. Actually, I feel a lot better now. In my case, I think taking a double dosage only when needed works best, verses taking them for any extended length of time.

You mention eating a bland diet, not sure what that consist of, but sometimes a salad actually causes reflux for me. Shortly after eating one, I can test the lettuce, etc..in my throat. I don't know if it's the roughage, or the dressing....Weird! Anyway, many individuals also have a problem with high carb intake too....Oatmeal will cause reflux for me, amoung many, many other foods.

Cmac33, I had lost weight in the past, and drinking Ensure & Boost helped with weight gain in addition to eating regular meals.

Hope things get better for everyone....

Huggs,
V
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