Prilosec Users & Reflux Sufferers--drug question (long)

[smartestnumber5]

I've been on prescription prilosec (40 mg) for about a year to treat my horrible burping and pain which doctors assumed was related to an acid problem. I actually have never gotten much heartburn, and only feel burning in my stomach once in a great while. My symptoms are mostly just pain and bloating--which can be relieved for about 3 seconds by burping--and incredible amounts of burping. Seriously, I don't know how much air can be in there!

Even while taking the prilosec I had to almost completely stop drinking coffee and alcohol, and had to be careful never to overeat at all or I'd suffer after. Over the summer things started getting worse, so I went on 80 mg of prilosec a day, but this was a temporary thing until I could go to a specialist to get them to do some tests on my stomach. (I had already had the H. Pylori test and it was negative.) I just had an endoscopy done a few days ago and the doctor said everything was normal (he also gave me a nice picture of my duodenum--we might frame it!). I also have a gastic empty test (where you eat radioactive eggs) next month to see if the stomach is processing food at the correct speed. I'm not really expecting they'll find anything there either though.

The doctor has already suggested I "can" go to a lower dose of prilosec--40 or 20 mg a day. I think I might wait until after New Years to go down, because there will be a lot of eating for Thanksgiving to New Years and I might die of pain if I try to eat at all normally on a lower dose. He mentioned that they've only just finished some 20 year studies on the effects of prilosec (40 mg) in Europe and they haven't found any bad effects, but they still don't know all that much and they don't know anything about what 80 mg would do. Hence it wouldn't be a good idea to live another 60 years on such a high dose. I also think I should probably not stay on such a high dose forever, but I think a lower dose might seriously impact my life. I mean, no coffee or alcohol EVER is bad enough, but even with the 80 mg I get breakthrough symptoms of burping and pain when I eat a little too much or go too long without eating or eat too much acidic stuff.

Is anyone else in a situation like this? Taking a huge dose of prilosec? Or taking a normal dose but still having symptoms?

(The doctor also said he's found that he has a lot of women my age--24--coming in with the same complaints I have, but mostly their tests don't find anything wrong. He said they then refer to it as a "functional" problem, and that IBS is the name of a functional problem of the lower intestines, so this would be analogous to IBS but apply to the upper GI tract. He made it sound as if they really don't have any treatments for it since they can't find anything that really needs to be treated. Anyone else here this type of thing from a doctor? It's kind of depressing--it seems like I either have to take really high doses of drugs forever or take more reasonable doses--still forever--but suffer on an almost daily basis.)

 

[DisneyBlonde]

Have you tried Prevacid? I have used Prevacid with great success for several years. It's kind of expensive, and one time I tried switching to Prilosec, and didn't like it as much.

 

[Aidensmom]

My 5 year old has been diagnosed with possible GERD (acid reflux) and possible IBS, they haven't really narrowed down a definite diagnosis, even after an endoscopy.

He takes Prevacid. However, the doctor does keep trying to lower the dose every few months. All of the current new drugs do not have long term studies done, well, because they are new. It does bother me a bit to have a young child taking medication like this daily, but for now it is what he needs to do.

We really watch his diet though, that really has a big impact. At one point he had a week where he was vomiting daily despite being on his medicine, and I figured it out by checking his breakfast purchases at school online - he was drinking OJ, which he knows is forbidden but he loves, so he was lying about it. We explained to him that was what was making him sick and he stopped drinking it, and he has been fine.

I guess what I am saying, if you don't already, really stick to the diet your doctor gives you (and I know it is hard!), but that may help you to not need as much medication.

 

[Fan2CSkr]

Discuss taking Nexium with your doctor. Nexium in recent studies has been proven more effective that Prevacid. Prilosec does not work as well as Nexium on my husband, he has been taking it for over a year now for reflux. Since everyone is different I would suggest that you try one of the others if you havent already and your doctor says its OK. Hope you get some relief soon!

 

[lovethattink]

That sounds very common to how I felt for years. Did they do an ultrasound of your gall bladder to check for gall stones?

 

[Christine]

I have been on Prilosec 20 mg for 8 years. I don't know what they will do to me. I've also used Nexium but I get more side effects from Nexium for some reason.

In your case, I might try some of the other PPIs (Nexium, Prevacid, Protonix, etc) to see if one of the "fits" you better before you settle for 80 mg of Prilosec a day.

I also think my issue is "functional." I have never gotten any heartburn. Just burning stomach, nausea, feelings of fullness etc.

 

[The Mystery Machine]

I don't have your symptoms but I do have reflux and only Prevacid works on me...
I have tried Prilosec, Protonix, and Nexium.

If I was in your shoes I would probably go for full tests including gallbladder and colonoscopy to be on the safe side.
They are very "telling" tests and will help you narrow down your issues.

 

[ckay87]

My DS is also on a daily dose of Prilosec, but for stomach ulceration issues. What concerns me is that on the package it says that it's just for a 14 day period. Our doctor just poo-pooed that, but why is that stressed in the directions? Perhaps it's a OTC issue.

 

[Pea-n-Me]

Have you ever investigated whether you might have a Food Intolerance? When you're intolerant to certain foods, GI distress can result when you eat them. I would suggest making an appointment with a Registered Dietician/Nutritionist, preferably one who specializes in this area, to help you sort it out.

The dose of prilosec you're on is high and fairly unusual. If it's not helping your symptoms much, you should explore other solutions. Good luck.

 

[daughter_of_amid_chaos]

Have you ever investigated whether you might have a Food Intolerance? When you're intolerant to certain foods, GI distress can result when you eat them. I would suggest making an appointment with a Registered Dietician/Nutritionist, preferably one who specializes in this area, to help you sort it out.

The dose of prilosec you're on is high and fairly unusual. If it's not helping your symptoms much, you should explore other solutions. Good luck.

I am on Aciphex and over the counter Zantac to treat my GERD which is associated with Celiac's Disease (a food intolerance to gluten). The symptoms did not appear until AFTER my celiac's diagnosis however.

 

[WeirdEyes]

I have the exact same problem! I'm on Nexium 80mg. I can't live without it! I also take Bentyl when my stomach hurts really bad. All of my tests were negative also and I was labeled IBS for lack of a diagnosis. Since the holidays are coming up, I'd stay on the 80mg cause you know you're going to be eating more. Take care!

 

[Happywanderer]

I'm taking MTX for my rheum.arthritis and started getting heartburn more frequently, so my dr.put me on Protonix. This worked for awhile but then was pretty ineffective. I told my dr. and she said that some of the drugs work for awhile on some people then stop, so she's put me on Previcid--so far so good. Maybe you need to try a different drug, instead of increasing the dose of the one you are on now? It would be worth a shot.

 

[eclectics]

Another vote for giving Nexium a shot. I take 40mg a day and have been for years. First I was on Prilosec, but it wasn't working well. I also take a Zantac at bedtime to tide me over until morning and chew an occasional Rolaids during the day. Even with all that I don't feel 100% terrific, but I refuse to give up my coffee!

 

[HOGFAN]

my GI guy me that I will always have the 'symptoms'. what is important is that the medicine is keeping down the production of acid.

 

[Snowysmom]

My 21 year old son has been on prilosec 40 mg since he was 16. I did alot of reading about prilosec and GI doctors who have been following patients on it long term and so far, they have not seen any major problems. He can't go off prilosec since his reflux is so bad it damaged his larynx and he had periods of not being able to breathe. He needs to keep the acid in check. However, if prilosec isn't working for you, one of the other meds might.

 

[smartestnumber5]

Thanks everyone for your advice.

I've heard people say nexium is magic and I did try it for a bit, but while I was on it I had some intestinal trouble. I'm not positive that the nexium caused it, but it went away as soon as I stopped taking it, so I'm a bit wary of going back on that. I did take prevacid for a little while and that seemed to work--though that was back before I got on prilosec, my uncle gave me some extra of his pills. I think it's a pretty good idea to try prevacid again (or the other PPI someone mentioned--I didn't know there was a 4th one).

I haven't had anything checked regarding the gall bladder. I should mention that to the doctor at my next appointment--thanks! I will also ask about the possibility of a food intolerance, and I am being checked for celiac (haven't heard yet).

I guess I should be thankful that there isn't any damage happening.


(And Aidensmom, I can't imagine dealing with this with a 5 year old--the poor thing!)

 

[buckylarue]

I've had problems with reflux for a number of years, and when I had my heart attack several years ago my doctor decided that I should be on long-term preventative treatment so that I can tell heart chest pain from esophogeal pain. I'm currently on double the normal dose of Protonix along with 4 times the OTC dose of Zantac, and I still have problems from time to time. Mine seems to be related to a tomato sensitivity; if I have any tomatoes or tomato sauce based food after 7pm, I have to make sure I don't lie down until at least 4-5 hours afterward. (I spent many nights sitting up in an easy chair to sleep before I figured out what foods were bothering me!) Good luck with your med regime!

 

[redshoes]

My DS who is almost three has accute acid reflux. I've done alot of research on the subject and from what I understand the medicine does not stop the urping and symptoms associated with it but it keeps the acid from doing damage. Kind of like a protective layer. There are several Proton pump inhibtors drugs and some work better than others for people. It doesn't hurt to give another one a chance to work if the one you're taking isn't working as well as you want it to. Keep in mind though that some take as long as 2 weeks to see any changes (I know this is the case with Prevacid).
Here are some of the tips that we use on a daily basis that help to manage the reflux. If you're finding that you're having more acid during the night, elevating your bed can help. Also you can use an antacid like Mylanta if you've ate something that doesnt agree with with you for an emergency treatment. We are forced to keep DS regular, the idea behind that is if he isn't backed up- the food will move faster through his system and cause less issues while sitting in his belly. Our GI doctor gave us this list of foods to try and avoid- whole milk, chocolate milk, fried or creamy style vegetables, tomatoes, citrus: such as oranges, grapefruit, pineapple, anything prepared with whole milk or high-fat, cold cuts, sausage, bacon, fatty meat, chicken fat/skin, all animal or vegetable oils, chocolate, carbonated beverages, chicken, beef, milk, or cream-based soups. Also there is a treatment called Stretta that seems to be promising for reflux suffers- there is more information about it here http://www.mayoclinic.org/gerd/rft.html
I have no idea what it's like to suffer from acid reflux myself, but I've watched my little boy suffer from it everyday of his life. Although it's minor compared to all the other illness that he could have, it has altered alot of what he eats and enjoys as a kid because it's not worth it for him to be sick and hurt all the time. I hope that you find something that helps you .