Digestive Disorders / Gastroenterology Forum
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Avatar universal



    My doctor prescribed prilosec about 3 months ago for what he feels is Acid Reflux (Gerd?)  Is this drug safe to take over an extended period of time?  Id also like to know if there are any gastro/intestinal problems that can cause wide spread burning, tingling, twitching, muscle pain, ear pain throughout the body?  I know that seems far fetched, but I have explored EVERYTHING, (neurologists, etc) and so far no one has been able to come up with anything.  Thank you for your time.
103 Responses
Avatar universal
Thanks for your input. I'm so sorry to hear about what your poor husband has gone through. I'm glad he finally found someone to investigate his pain further. I wish you both a more full and enjoyable life together. I just saw my primary m.d. again today.. he put me on a new medication which is supposed to have fewer side affects...aciphex...which you may have read others hear talking about. I'm nervous that it may cause more problems than it helps, but my pain and stomach upset is getting worse, and i have to do something. My doctor's brother is a G.I. specialist, and he says if this doesnt' work, he'll refer me. Good luck to you!
Avatar universal
In 1982 I was diagnosed hiatal hernia and GERD.  After many psychiatric visits I  was stabilized.Of course, with antidepressants and Xanax for my panic attacks.  I quitted alcohol, cigarettes and spicy food.
In 1997 after my 2nd endoscopy & biopsy, I was diagnosed with the hernia and the GERD once more and also stress.
Last  year I had too many flu like symptoms, my ENT said that it was due to the reflux while sleeping.  I elevated the headboard of my bed.  The symptoms have worsen and my gastroenterologist prescribed Zantac 150mg twice a day, a bland diet and Carafate.  This helped for a while until I visited another gastroenterologis.  He prescribed me Prevasid and it helped me cuting down acid for 3 days until I started having stomach ache.  He changed it to Prilosec and I've been using it for 50 days.  Of course the reflux desapeared, the pain at my right quadrant desapeared but:  I have a lot of pain in my muscles, I feel my stomach like if I am 5 month pregnant.  And 5 days ago I felt a big pain at my right leg and I had a lump, like a vein very inflamated.  The next morning I had a big blue black lession so I read the Prilosec literature and found that it says than an adverse reaction is: Peripheral edema (water retention) and inflated stomach.  
Friends, it is true that Prilosec is not for everyone.  Tomorrow I plan to quit Prilosec and go back to Xantac, or Axid until I visit my GE.  We are not alone.  Thaks for shearing experiences.
Avatar universal
Ok.  After reading most of the posts on this board and skimming through the different symptoms, it just starts me to wonder even more if acid reflux is actually what I have.  (I have had my doubts on this from day one as I have never gotten any acid taste or feeling.)

I have been having trouble swallowing for over 5 months now.  Back in May I had an upper GI done and that showed reflux esophagatis.  Ok, so at least it came back showing something, right?!  Ha!  I still have my problem and it is keeping me from eating half the time.  I've lost about 45 lbs. over the past 3 months.  Within the past 3 days I have lost 3 lbs.  I don't think that I should be losing a pound a day!

I have had the ultrasound done, been checked for gall stones and my blood work is fine.  My symptoms consist of my getting a feeling of the food/drink getting stuck in my upper chest.  Doesn't seem to matter what it is I eat or drink.  Two foods I know that I cannot eat are french fries and chicken.  Other than that the problem seems to act up whenever it wants to.  I have tried eating healthier but at times when trying to eat a salad or some fruit (no citrus), etc....I still get this problem and I wind up eating maybe 3 forkfuls of food.  Now when the problem gets real bad I've started to eat baby food at least in the hopes that I am getting some nutrients in me.

I get the ocassional burning (like heart burn) across my chest as well.  During the night sometimes and also during the day.

My 1st dr. prescribed Prilosec (20mg) to me and unfortunately I didn't see much of a change so we increased the dosage to 40mg.  That seemed to have worked very marginally.  Since I wasn't getting anywhere I went to my 2nd doctor and he switched me to Prevacid.  Still....not much better now.  I'd say it was kind of a trade-off and have told the doctor so...when I was taking prilosec I was still having trouble swallowing but on the double dose I seemed to have gotten rid of the burning.  On the other hand, the Prevacid I was waking up every other night with the burning on the first week even though I could actually eat meals.  Now it seems like I just can't eat and am getting the burning in the morning, at night...whenever.

I have a consultation with a gastro specialist next week and they'll probably go over my records and see what has been done and probably ask me some questions to see if they can figure things out and then I may have the endoscopy done.  I'm not looking forward to this.  Has anyone out there had an endoscopy done and what is it like?  I do not like any type of procedures where they need to stick any sort of thing in me.  Yet I suppose I've got to get it done if I want to figure out what is going on in my esaphogus.  But after reading so many different peoples posts all over the Internet and seeing that they have had all of these test performed and tried all of these medications and still have to suffere with living with their problems...I just wonder if it's at all worth it or whether I should just sit back and let myself gradually starve to death.  Isn't there any hope?!

If anyone is replying it would be best if you do so by e-mail.  ***@****.   Thanks!  Char
Avatar universal
Some good reading.  Thanks to everyone for their input.  Here is mine.  I was diagnosed with GERD 7 years ago (I'm now 30).  Started with Zantac, then tried Pepcid, these were not strong enough to help relieve the burning sensation in my chest for very long (felt like a heart attack because the pain was high in my chest).  I was put on Prevacid 30 mg. about 5 or 6 years ago.  Worked wonderful, no side effects.  Switched to Prilosec 20 mg. about a year and half ago and it worked just as good.  The only thing I noticed was I started getting muscle twitches about 8 months ago (mostly in my arms, but also in my legs and elsewhere).  They don
Avatar universal
Some good reading.  Thanks to everyone for their input.  Here is mine.  I was diagnosed with GERD 7 years ago.  Started with Zantac, then tried Pepcid, these were not strong enough to help relieve the burning sensation in my chest for very long (felt like a heart attack because the pain was high in my chest).  I was put on Prevacid 30 mg. about 5 or 6 years ago.  Worked wonderful, no side effects.  Switched to Prilosec 20 mg. about a year and half ago and it worked just as good.  The only thing I noticed was I started getting muscle twitches about 8 months ago (mostly in my arms, but also in my legs and elsewhere).  They don
Avatar universal
I too just started on Aciphex... I've been on it a week, and it has helped my GERD symtoms alot. I'm worried, though, about the unknown side affect factor too, since the drug is new. Please keep us posted if anyone starts to experience side affects...I'm particularly concerned about the neuro side affects, since i've been down that road before....Thanks
Avatar universal
I have been on 20mg of prilosec every other day for reflux for about 3yrs now.  I tried to stop this medication and I noticed that I only needed it every other day.  I feel great and can eat any type of food without any heartburn,belching,or symptoms of this disease.  I hope there are no long term effects from this drug.
Avatar universal
i just showed these responses to my 13 yr old who suffers  from some of these same symptoms.  he was just  put  on prilosec, but is still experiencing a lot of pain. he just missed a whole week of school because he feels pain in his stomach and a weak sensation in his knees. after reading some of the responses he told me he feels better knowing hes not alone.  he would like to print out some of these  cases to show his "friends", teachers, but especially his father who, my son says does not believe him.  is there somewhere i can information to share with these people in my sons life who are making his life most stressfull by calling the poor child a liar! i would appreciate any help
Avatar universal
I have been operated on for gall bladder and I was told I probably had a compound problem.  GERD   Well it has become very bad and I feel like I swallowed drano.  It burns so bad in my esophagus and throat and heartburn and pain in the arms and neck tightness.  I can feel the stuff come up in my throat.  I am very miserable.  My surgeon wants to wait til I am more healed to do anything and has upped my prilosec to 40 mg. instead of 20 which were not working and this had made all my symptoms increase.  I am so miserable and feel bloated in the stomach and pain and headache and ringing in the ears etc.   I am so discouraged and need help    I cannot go on like this.  Thanks
Avatar universal
Avatar universal
Avatar universal
Here's what the manufacturer of Prilosec has to say about side effects. I suggest everyone be aware (some of these are rather serious)>

Avatar universal
I think i have you all beat! I have been on PRILOSEC 20mg for about 11 YEARS. It does work but now i have elevated enzymes in my liver. And this really sucks,i think it might have somthing to do with the long term PRILOSEC use.But this is just my opinion. I go back to my doc in 5 weeks, have to abstain from alcohol and fatty foods during that time. I am really much of a drinker but i have put on some weight. PRILOSEC lets you eat anything you want,without the heart burn and thats why i think i gained my weight. So think it through before you get stuck on this med long term! If i had it to do all over again, i would have had the surgery! So please THINK ABOUT IT !! e-mail me at..***@****. Look forward to here from other long term PRILOSEC users. HAPPY EATING.
Avatar universal
I ment to say that I am NOT much of a drinker
Avatar universal
I have suffered with daily bouts of severe heartburn since I was 18 years old,I am now 42.I have been tested for everything on the planet and have been a 4 a day zantac or pepcid ac (sometimes i switch they seem to lose their effectiveness)user for many years.sometimes when it gets where I can`t stand the pain anymore I go to the DR. who gives me a 4 week dose of prilosec.It helps while I take it but back to square one when they`re gone usually in about a week,my dr. blames it on stress and bad eating habits.I can`t do any dairy product,fruits,meats,hell even white bread just about kills me,and when i told my dr. that i even get indigestion from drinking a glass of water he just looks at me like i`m nuts.I have had extreme pain in my left upper arm and breast and have muscle cramps while sleeping,and on several occasions i throw up.I`ve been reading all you`re entry`s so i don`t feel so alone anymore and i`m going to try some of the products you  have suggested.small tip for severe nightime indigestion those round peanut butter crackers made by lance are my miracle drug don`t know why and don`t care.I`m sure like the rest of you,you would do anything short of killing someone to get relief.Good luck to you all.
Avatar universal
My gastroenterologist prescribed Prilosec for what he called "mild" esophagitis and gastritis.  My symptoms seemed to get worse.  Severe chest and back pain.  Weird back pain, even on mild exertion.  Two years of chronic, severe, pain.  My doctor told me he was "stumped" (scary).  Then I tried a new doctor who gave me samples of Aciphex.  It's a miracle.  My symptoms are gone, and I have again joined "the Living".
Avatar universal
To June.  Go to an allergy dr.  He will help you.  I have the problem with mucus in the back of my throat many times.  It's all do to the sinus.  I take sudefed, that helps alot but you may have a sinus infection.  If you do have an infection the dr. will give you an antibiotic to clear it.  But for me every time I get the mucus I go right for the sudefed and it does help.
Avatar universal
To June.  I would go see a ENT (ear, nose & throat) specialist.  That's what I meant to say.  Not an allergy dr. An allergy dr. may help too tho but it will cost alot more money.
Avatar universal
I have suffered from acid reflux and asthma and a 5 cm hiatal hernea.I have trouble swallowing when eating most foods.Spicy foods are worse, soft foods are best. The food will actually hang up in my throat and won't go either way, creating salava until I eventally throw up. Not being sick at my stomach I can return and try to eat again, sometimes returning to the bathroom hung up again. I have taken Tagament ,metoclopramide, and prilosec. I also take Alprazolam which is a generic form of Zanax for anxiety.I have only been taking prilosec for a couple of weeks, after some of the reports I have read I may not continue. My Asthma had me down to 20% breathing on the the breath test only a few years ago. I take Serevent and Flovent inhalers and have rebounded to also 60%. The doctor told me acid reflux has a direct connection with asthma attacks.So far I have not been able to control my acid reflux.Thanks for all the input, I hope mine will be helpful. Gary
Avatar universal
To Leonard. I am taking prilosec.  I don't take it everyday.  When I try to eat bland foods I'm fine but when I go back to eating normal I get the pain and heartburn terrible.  If I don't take the pill I can't eat fruit or practically anything that is good for me.  I did have alot of the pressures that you are complaining about.  With me alot of it was my nerves.  I had so much anxiety because of my health that I would have the irritability and uneasiness.  I learned not to eat for a few hours before going to bed because I would get the pressure in my chest and waking up with terrible shortness of breath and belching alot.  It felt like I was going to die.  But since I don't eat for a few hours before I go to bed it doesn't happen anymore.  I suggest not eating before bed.  If you smoke, stop!  I am not going to be on prilosec for very long. I am looking into all natural remedies to the pain and heartburn that I get.
Avatar universal
Has anyone had a situation where their spouse developed GERD at about the same time they did. My wife and I started having symtoms about a week apart - weird! We have been trying to identify a cause, but do not have an answer.We are 52 years old.
Avatar universal
Very Interesting!
I have been on Prilosec for 3 years now.  Here's my story.

My original episode 3 years ago that actually sent me to the Dr. was as follows, I had a sharp pain in my stomach, (it felt like I swallowed nail and the nail was poking my stomach).  The next day my throat was raw from the back of my mouth clear to my stomach and my inner-ears hurt like an ear infection.

My doctor said it sounded like reflux and the ear problem was an unrelated virus so he prescribed 20mg Prilosec daily.
The Prilosec helped my day-to-day heart burn, I NEVER have HB anymore.  However, once or twice a year I will have an episode as described above, stomach pain followed by raw throat and ears.  (doesn't sound like Gerd to me)

In the last few months I have started having nausea, stomach cramps, diarrhea, tightening in my throat and chest, and a low pitch humm in my left ear.  I am afraid that I may be experiencing side effects from the Prilosec.  I am going to stop taking the Prilosec for a while and see if these symptoms subside.

It is a sad situation that I learn more about my problems from surfing the internet and reading other peoples horror stories than I can from paying countless doctors.
Avatar universal
I've Been On The Ol Prilosec For A Week Now An Haven't Got Much
Relief Yet, The First Few Days It Seemed To Help But Woke Up The
Sixth Day With That Burning Sensation Above The Stomach.
I've Read In This Fourm That You MUST Take Prilosec At The
Same Time Every Day An Some People Take Longer To Respond! Like Me! Ive Been On Previcid, Zantac, AN Aciphex All Did Nothing!
Been Through Echo,stress Test, Upper GI(NASTY) An Endo Last January With My Gastro, All Of Witch The Outcome Were Normal.
Upper GI Ruled In Hital Hernia An Mild Acid Reflux!
Good Luck To All!
Avatar universal
Try Axid it works and you can get it over the counter without a presription. I suffered for two years and tried all the drugs out there and then along came the Axid and now I can eat anything I want and sleep with no pain or spasm. I take two a day and thats it.Axid it is great!
Avatar universal
Hmmmm....lots of the same stuff. Well, I've been on Prilosec for a year an a half, but since the co-pay on my insurance is half the price for Prevacid, i switched today.
I actually have an app't with a GE next week, as if I don't take my PPI drug daily, I basically can't swallow anything. The other night I slept sitting up, because my stomach contents were flooding into my esophagus.
I am really considering just getting the preliminary tests for having a Nissen fudoplasty done.
Just wondered if the side effects of the surgery outweigh the side effects of long term use of Proton Pump Inhibitors.

Avatar universal
I've been taking Prilosec for 3-4 years now & i've got to admit i thought it was a lifesaver because none of the pepcids or zantac's, over the counters worked for me. I've never been officially diagnosed with GERD, even after numerous barium upper GI tests which supposedly don't show anything! But, i know i suffer tormenting heart burn & i always throw up in my throat & so i've taken Prilosec ever since, if i miss a day, its like living in hell & tourment, the acid reflux is that bad, i know you all can relate! Anyhow, i'm now starting to have major problems swallowing, i've always had difficulty like swallowing tortillas & swallowing pills cuz they always seem "stuck" in my throat for hours on end, but latley, i'm having major pain in my throat, and everytime i swallow, eating or not, my throat "clicks", my doctors think this sounds crazy and no one in my family knows what the heck i'm talking about. Does anyone have or has ever had their throat feel as if its closing & click when they swallow? Its extremely painful & all i can think of is that it must be related to my reflux disease. I don't know why my doctor has never reevaluated me taking my Prilosec & why i've never mentioned my swallowing difficulties over the years, but this month has gotten sooo bad, i feel panicked & anxious & the problem of swallowing & my throat closing is causing me serious mental anguish & my doctor only refers me to an allergy clinic! I don't know what else to do & how to get the help i need? I feel like no doctor will take me seriously & how do you get a darn refferal to a specialist when your in an HMO. Its like pulling teeth! I feel like i have a lump in my throat as well & i have alot of jaw pain, i was told i had TMJ, wonder if that's related in any way? Anyone have any advice for me? Itd be greatly appreciated, i don't know where else to turn other than to my fellow sufferers & survivors, god we're all so strong to have gone through this stuff! I'm considering stopping my Prilosec but i am not sure if i should do it on my own, i think i need a doctors guidance on what to do, so how do i get myself to the doctor i need to see?
Avatar universal
Lisa, I too have experienced the clicking when swallowing.  I was recently diagnosed with a hietal hernia and acid reflux.  I am on Prilosec 20 mg twice a day and regalan 4 times a day.  I have been experiencing fatigue, my doctor is testing me for Myastenia Gravis and Mono.  I have this feeling of a lump in my throat and have trouble swallowing sometimes unless I clear my throat.  I did have buring in my chest but this has been relieved since on the Prilosec and Regalan.  I do have this fatique and now wonder if it is from the meds.  I am going to a ENT specialist next week to see if I have chronic sinusitis?  It does help to share symptoms.
Avatar universal
This is a reply to Lisa (Sat., Dec. 30, 2000).  I couldn't help but notice a similarity between your symptoms and those experienced by my mother.  She recently had her esophagus dilated because of a disorder called "Shotskis Ring".  Certain foods, especially tortillas and certain kinds of bread flour, would cause her severe pain and the feeling that she was choking.  She suffered through this for about a year and just tried to avoid those foods.  Attacks would come on with no warning.  The surgery was done on an outpatient basis and was perfectly painless and highly successful.  She regrets having waited so long to be treated.  I wish you much success in your diagnosis and treatment.
Avatar universal
I had similiar reactions to Prilosec as those posted by N on March 1, 2000.  I had red patches pop up on my sides and my hands, terrible itching, and also had very dry skin.  My Dr. switched me to Prevacid and these side effects went away immediately.  I've had difficulty swallowing for the last 3 months and have been diagnosed with GERD and hiatal hernia. My heartburn seems to be gone but my swallowing problem is worse than ever...I'm basically on a soup and liquid diet.  When swallowing, it feels like there is a ball of trapped air about
midway of the throat that is interrupting the passage of food and also an intense lump in the throat feeling.  Any thoughts?
I have been looking at fundoplication...anybody out there had this procedure done?
Avatar universal
Been reading some if not most of these replys.
It's creepy!
Are doctors really doctors anymore?
Every time a magazine comes out have you ever
Always with a smiling, happy go lucky model
that gives the rest of us miserable creatures hope!!
Yet, turn the page over and WHAM! In teeny tiny print
that you need a magnifying glass to read,
is the host of "Contradictions" and studies that would
make the smiling, happy go lucky model search out a
faith healer!!!  Pharmacies have much to gain and
we have much to lose....
I too was on Prilosec.
Read Patty's post on  October 27,2000!!
I took this wonder cure about five months after my gallbladder
was removed. I also quit taking it on my own accord listening to my body and how it was reacting. Geeeeezzzzzzzz.
Avatar universal
This past summer, I started having gurgling in the throat and when I would bend over, this foamy mucus would come up.  I also has some burning with various foods, i.e., red sauces, chocolate, mints.  I bought Mylanta Extra strenght and this was my faithful companion.  

(Backing up a bit, my GP in 12/99, gave me an RX for priolosec as I tild him, I was having soem burning (not bad) I took it when i thought I needed to.)

I went to an ENT doc in 8/00, who said he could not see anything in the Laynyx (vocal cords) that indicated reflux coming up.  He said he can tell if a person is expereincing a reflux problem.  

Went to a pulmonay doc as I was also having breathing problems and noises in my respiratory tract, mainly on exhaling.

CT SCAN of the chest, spiromrty breathing tests, chest x-rays, broncoscopys really did not show much that would answer for my distress.  (teeny cysts found on lungs)

Had loads of blood work.  Normal.

He sent me to an allergist and more Costly test. etc..  She prescribed boo coos of inhalers and Prevacid.  I took Prevacid and then I would add a prilosec here and there and vice versa. This was my idea.  But, it seemed the more I took of this stuff, the worse I felt.

Finally saw a gastro man in November. He was  nice to me and assured me that he could get me well by Xmas but first must do an EGD and colonoscopy. He told me that I had GERD.  He gave me samples of Achifex (spelled wrong) and told me that I would start feeling well in 3 days.  WRONG!!!  I kept taking this stuff
until my EGD, in late November.  I was miserable.  I had more pains, felt goofy, itched like &*$%$%^& and headaches.  I went back to the Mylanta Extra Strength and tried a prilosec here and there.  I was still miserable.  

The EDG showed slight inflammtion and a lil stricture that he lanced? and a hialtal hernia.  Biopsy ruled out Barrett's esopsagitis and H-Pylori Bacteria.  I also had an Ultrasound of the Abdomen which was negative,

The Gastro man that was nice before the EDG had turned cool when i did not respond to proton pump inhibitors and was down right surprised of the side effects I told him I was having with Achifex (sp) as he told me that I was his only pateint that EVER had side effects with one of these meds, I.e. Prilosec, Prevacid, Achifex.

This Gastro man (whom by the way I will not return to see ) should read up on this site.  He made me feel like some kind of nutt case by indicating there were no side effects to these meds.

I told him that there was another problem as I am much worse.  He said I need to try Meditating as the brain was telling the stomach to act up!

I saw another doc and he told me that I need a 24 hour ph monitor probe done to see just what is going on with the reflux.  He said some people have a Motility disorder that acts just like GERD. (I hope i have related this correctly)  This doc would not take me on as a patient as he is not an expert in Motility disorders.  

He also mentioned various surgeries, which I really did not want to hear.   He said there were 3 kinds.  Two are still investigational.  (do not want surgery unless it is the VERY last resort)  he also mentioned an ERCP test but he said he use to do them but patients  were getting  Pancreatitis after this test, so he quit doing them.   He told me that if one has this test done it had better be with one that has done it over and over and over again and with good success.

He only mentioned this to me as I am/was having pain also in the upper right back and under the right rib cage, sporadically.  I wonder though if these could of been a side effect of one of the meds??

At this writing I am in Limbo.  he did give me the name of a gastro doc who specialized in Motility Disorders.  I have to take a brwak before i call him.  I am tired of seeing and talking with doctors.  I am watching every lil thing that goes into my mouth.  I also have had soem success with Zantac (over the counter) and followed the directions to a tee.  I may also try Pepcid Complete that was advertized on TV last night too. This is also over the counter.

I know this is long but I feel this site has helped me in the realization that I am not alone and I am not a nutt case.

I also am now aware that just because a doc is logged into a specialty does not mean that he knows everything about that specialty.  I am also aware that some doctors do not want to admit defeat so it is all the pateint's fault that she/he is not getting well.

I have learned and still learning about physicans and how the system works.

I vow though, that in 2001, I will know what is wrong with me and
pray that i will feel better.  I have a wonderful family and grandbabies. Now only do I owe this to myself but to them also.

I will not sit back and be intimidated by any physician.

When I do  make an appointment with the "supposedly" Motility specialist, I will ask for a consult only.  This way, I will do the interviewing and will come well prepared with questions.  If I feel this doctor is  kind, compassionate and a knowledgeable doctor, and can help and direct me, then I will become his patient.  

Again, I apologize for the length.  I certainly can relate to many of you on this site.  I have and am walking in your shoes.

God Bless Us.


Avatar universal
Thank You Fernando for your most informative post.

Pls. do your research on any surgeries.  You do not want to get worse.

I live in a big city and there are 2 teaching universities here.  The doc that i will be eventually seeing is supposedly the best in the city for motility disorders.  I hope so and I hope he is a nice one too. (:

Pls. keep us posted.

Avatar universal
I have to admit that there have been some horror stories in this forum regarding proton pump inhibitors.

My story is pretty straight forward and I hope it helps people with the same condition. I am a 30 year old male and I had heartburn since I can remember. When I was 14 my mother finally decided to take me to the doctor. At the time I was diagnosed with gastritis and the doctor just suggested to watch my diet. Since keeping a diet for long periods of time is quite difficult, it did not last for long. Regardless, the symptoms never went away. So I figured that this condition was going to follow me for life.

By the time I was 25 the heartburn started to combine with some abdominal pain which took me to the ER room a couple of times.  Finally I decided it was time to see a gastro.  The doctor suggested an upper endoscopy with biopsies to check everything out considering the fact that I had been suffering from it for quite some time.

When the results came back I was quite surprised.  To start I had GERD and due to the length of my condition I had developed Barret's esophagus (It is a condition that results from chronic GERD. After a long exposure to acid reflux the esophagus starts to develop an abnormal tissue that begins to cover the affected area, in a way to protect from stomach acid. Unfortunately this tissue is a very early pre-cancerous condition, therefore undesireable). He also said that the Barret's was showing a beginning of a Low Grade Displasya, which is the next step up towards cancer. He also said that the dysplasia could be a result of severe inflammation in the affected area due to the reflux and the fact that I was infected with Helycobacter Pilory bacteria (the one linked to the cause of a great number of stomach ulcers). The plan was to put me on antibiotics for the bacteria and a proton pump inhibitor to stop the acid reflux and then come back in three months for another endoscopy.

I took the antibiotics for two weeks and I started taking Prevacid 30 mg. twice a day.  Within a week all the symptoms were gone and I had absolutely no side effects whatsoever, except some stomach discomfort, which I had anyway before I started taking Prevacid.

Three months later I came back for another endoscopy and when the results came the doctor was very quick and unhelpful. He was unclear explaining any changes on my condition or any other alternative treatments. He just said that I needed another endoscopy within a year and that I only needed to take Prevacid once a year.

I am not very good developing habits as far as taking pills, but I did my best with the Prevacid. As long as I take it every day, I don't seem to have any symptoms at all.  That was quite a relief after 30 years of heartburn; though it wasn't as bad as other people's (Three to four times a week, or when either drinking or eating acidic or irritating foods like alcohol, vinegar, citric fruits, tomatos, chocolates, coffee, tea, etc.). After missing a pill it would take 24 hours before I felt any heartburn mainly if my diet was a bit undesirable (fast food, pizza). As far as side effects I have not had any.  

After six months I started to think about the last visit to the doctor and I felt really bothered. I didn't like the lack of information or help that I got.  So I decided to do a little bit of homework on my own.  I started reading articles in the internet, magazines, and books about my condition and decided to change doctors.

It took me about a year and a half to finally make an appointment. I did some research trying to find someone specialized in my condition. I got another endoscopy and the results were very promising.  The low grade displasya had reversed therefore the inflammation was completely gone (even though the Barret's was still there since it is a permanent condition). The doctor was very happy with the results so he was going to send me home on prevacid and a yearly endoscopy to monitor the barret's. That's where all the reading and research became helpful. I started asking questions about certain issues with Barret's and GERD.

First I asked him if the bacteria was gone and he admitted that he had overlooked that. An honest mistake, but it would have gone unnoticed if I hadn't asked. So he sent for some blood work.

Then I asked him what was the effectiveness of proton pump inhibitors since I had read some articles stating that asymptomatic patients could still have severe reflux without noticing it. And that is crucial information for people with Barret's since continuous reflux will increase the chances of esophageal cancer. So he decided to send me for a PH Monitor test which would test the acidity levels in my stomach while I was taking prevacid.

Finally I asked him about the long term effects of proton pump inhibitors. And so far so good with no major side effects, but they have only been tested for periods of up to ten years. Any longer than that, who knows. And that is when he suggested surgery to correct GERD. Considering that I am young and otherwise healthy.  I still have to decide what to do about that. But this time around I was a bit happier about the outcome of the doctor's visit.

I have learned a few things during this crusade. First of all, if it is possible, do some research before you go to the doctor. It pays.

Make sure you do your homework when you choose a physician. I found doctors working at university hospitals tend to be a bit more informed than the rest.

As far as Prevacid.  I have not had any problems with it. It eliminated all my symptoms and I have not had any side effects. I have been taking it for over two years now.

If you had had either heartburn or GERD for a long period of time, get an upper endoscopy to make sure you have not developed Barret's. It is a condition that has to be monitored and one in ten cases will develop into esophageal cancer.

Also if you are already taking prevacid it is a good idea to get a PH Monitor test, even if you are asymptomatic, to make sure that your reflux is controlled.

Anyway, I hope this story is of help to answer some of the questions in this forum. Good Luck to everyone. You will need it.

Avatar universal
Thank you Fernando for your information. My boyfriend was just diagnosed with Barrett's. The one thing his doctor neglected to mention was testing the PH levels to make sure the medication was taking care of the acid levels. We will be calling right away to check into this.

He too has suffered since his teens with heartburn and always shrugged it off and took Tums and the likes. Until the past two months when it became so unbearable he thought he was having a heartattack. Which with running a few tests turned out to be Barrett's.

I wish you the best and hopefully you and him will beat this and not be a statistic. Good luck.

Avatar universal
Hi Therese, They biosied me for barrett's.  I dod not have it but not to sat that at some point it does appear.

My girlfriend was diagnosed with it and she has to have an EGD every year with biopsy to make sure it remains in the benign state.

My gastro man acted surprise, almost dumb, when I asked for a ph Monitor.  Plus, I want the Barium swallow x-ray also of the Esophagus.

Good Luck to all of you.
Avatar universal
Everyone, Prilosec has it's place when used appropriately. However, it was never designed to be used on a "long term" basis.  But, "long term", is relative to individual circumstances. In some perople it might be a few weeks and in others several months or years.

The drug by greatly reducing acid also greatly reduces the body's ability to abosrb iron. Iron is essential for the body to absorb the "B" vitamins and in particular vitamin B12.

Although, B12 is stored and can be called upon to make-up needed defiencies, eventually the well runs dry.  Defiencies in iron and B12 create muscle pain/weakness, exhaustion,numbness and tingling in extremities, bloating,etc., even weight gain, many of the symptoms described in your responses.  

Test for Iron and B12 levels should be run and compared with any pre-Prilosec tests to determine if there is a significant reduction and what actions may be needed.  To say that somemone is within the "normal range" is not appropriate in this case. What is normal for you may not be the same for someone else. If you are experiencing some of all of these symptoms, a notable reduction in your levels is significant.

Unfortunately most Doctors prescribe meds in an assembly line manner, with a "one size fits all" approach. Many doctors are excellent in diagnosing a condition,  However, few have detailed understanding of the meds they prescribe and how they may interact with other influences or medications. Instead of being an "expert", most Doctors tend to rely on limited information and word of mouth provided by the drug manufacturers that are trying to sell a product.  

What this means to us, the people that have the highest stake and the most to lose in the effects that meds generate, is that we need to our homework.  Patty, on her 10-27th response stated it well; read the detailed information contained in the insert in the packaging from the manufacturer.  But take it further.  Check out any newly prescribed meds with several Pharmacists to see what food/drink, inviormental issues, and other influences may effect the effiency of the meds and you.

The problem of Doctors having little time or interest to develop high skills in pharmacology is a real problem.  So much so, that there is now a movement to develop "Pharmaceutical Consultants" that would be available to Doctors and patients for consultation before issuing or using a prescription.  

Whatever you think, believe in yourself and listen to what your body is saying.  If the "cure" is worse than the problem, it may be that the cure is the "problem".
Avatar universal
I have been on Prilosec since 1992 (almost 10 Years) I have a large Hiatal hernial which I was most likely born with. Since I was a young child, I recall after eating dinner i would lay on the floor with a pillow under my stomache to try to help ease the pain. By age 6 I was popping rolaids like they were candy to ease the acid relux/ heartburn. I go married in 1992 and the initial stress along with alot of hard liquor made me realize that this pain i knew my whole life was not normal. I would spend the weekends in bed with nausea and pain. I was tested and got scoped. They told me that I had the biggest hiatal hernial they ever saw. Afetr a few different meds they finally asked me to try a new drug called PRILOSEC that was in trial studies. I did so and since a few days after taking it my quality of life increased 10 fold. This drug has changed my life! I do wonder about any side effects though. I have a abnormally high cholesterol problem and have gained weight (About 30 lbs)
Good luck!
Avatar universal
Just a short note...thank-you all for telling your stories. i no longer feel like a hypochondriac. I have had "stomach problems" al of my life. I am currently 43 years old and have had endoscopys that showed bad GERD but not barretts yet, and a PH monitor test that showed very very high amounts of acid reflux. If they could do the surgery they would but i am also very over weight. although that seems to be a problem that my dieting and this disease is slowly taking care of. i have lost 60 pounds in the last year  (hard work and exercise) and have another 60 pounds to go.

I am on aciphex 2x a day and am still having bad symptoms. asthma, chest pain and burning throat. i have a wedge under my head at night and have cut out fatty foods, tomatoes citrus chocolate mint and caffeene. I have been a good little trooper and still have only experienced temporary relief. i have gone through axid and carafate and pepcid and prilosec and prevacid until I have reached the new game in town aciphex.

Has anyone every tried going "back" to an older medicine to see if maybe we just develop resistance to some of these meds after a while on them? i am thinking of asking my new gastro guy if that might be an option. i know I did very well on a combination of axid and carafate but was switched just because i had to switch doctors when i moved. anyone ever take those in combination?

I am about to see a new gastro guy because the last one thought the way to "help" me was to try and bully me and not talk to me about facts and options. He actually did the endoscope, yelled at my husband to be in his office friday because i was going to need his support in case i had cancer and walked out of the waiting room. (I did not have cancer or barretts) we were told this was how this particular doctor treated a lot of his patents and was quietly given the name of several other doctors that we might chose to move to by the kindly hospital staff (a Florida hospital) by the way, i am a nice person who never did anything to deserve this kind of rude behavior!  (is it your experiences that most gastro guys have personality disorders?) I am told that this new one is a very kind man who will actually take time with me and listen to me and explain to me ALL of my options and the availabiltiy of new and experimental techniques. That is all i ask. someone who will take the time to listen and try and explain.

Most of what i have found out about this condition i have found out on the internet. Thank-god for places like this.

Avatar universal
I have had quite a different problem, different symptoms than most of you- yet my Dr. prescribed me zantac, then prilosec. I have a dull achy feeling in my stomach- most prominent when my stomach is empty. I started feeling this dull strange pain after the birth of my last baby about 9 mos. ago. I had an upper g.i. and it was normal. I also found no relief with zantac. The Dr. said I have a "nervous stomach" which, if left untreated will result in an ulcer. I do not wish to take these meds, I am a sceptic. I am wondering if anyone else has these type of problems with an EMPTY stomach.
Avatar universal
Avatar universal
Well I will add my problem to the bunch and maybe someone can help me.  I have what was diagnosed by my Dr. as GERD, he put me on a perscription strength of ZANTEC, which is not working. I have this very disgusting taste that I burp up very often, it's so bad that I want to vomit, but don't. I also get very bad cramps and feel bloated. It comes and goes. I'll be fine for a few days, then BOOM, feel so bad I can't stand it!  I also have diareah(sp) very badly when this happens, and when I feel okay, that goes away also.  I can't live with this.  Does anyone know what may help? I've been trying to keep track of what I'm eating, and not drink carbonated or acidy drinks or spicy foods. I don't know what else to do.  Any help will be appreciated.
Avatar universal
I must admit unabashedly that my eyes shot wide open when reading your comment about your symptoms - clicking mouth while swallowing and the feeling that crunchy foods get stuck in your throat...  In sympatico, I had the same symptoms, though at varying times, and sadly, have not every come to complete grips through the aid of western (or eastern, for that matter, but never really tried...) with the problem.
The clicking throat, which seemed to be emitted from the upper esophogeal rings, or even the neck spinal bones... Queer as it sounds, I felt it rivot through my body one day while a cricket was chirping - it felt as though it were resonating with my entire upper body, in an extraordinarily unpleasant manner.  I went inside, and some of the vibrations stopped, but I was getting strange clicks on swallow, which were immensely perturbing... I was under a lot of stress at the time, and this did not assuage it...

As for food getting stuck in the throat, that was what started this whole rollercoaster adventure of maladies while aging - I couldn't hardly eat any longer with the sensation that the food would lodge itself in my esophagus - apparently there was no aperture there, upon GI, but it sure felt that way!  Taking Prilosec for a while now, *definitely* helps with chest pains and acid reflux, but did little for the throat.  However...

It repaired my stomach enough that I am able to smoke again, and as onerous as it may be, smoking actually diminishes the sensation in the throat, if not completely cures it.  Well, now my lungs will be in for a bout, but the throat problem occurs only most rarely.  I think lactose intolerance plays a factor in the throat affair, but I am most definitely unsure.  Keep your head high, and your back straight,
Avatar universal
hi Tigerg...First off, I heard the same negative statements about Gastro Doctors.

When, I read your comments about your experinece with one, I immedialtely thought you had seen the same doc I did )-:
But reading further, you are in Flordia and I am in Texas.

I also was given a list of names of various gastro Docs by the nurses at the hospital where I had my procedure done. I too, was treated very poorly.  This doc had no respect for me.

I did report him to the hospital, to the referring physician
and to the staff.  

BUT, after weeding out the "new names", I did find a kind gastro doc.  A female, at the same hospital. Good/Kind Doctors are out there..just have to do your homework and ask a lot of questions.

They think I have GERD but in the Vocal/Larnyx area.  I am being treated now and will see her again soon.  I am not responding to any Proton Pump Inhibitors so far.  I do not have Barrett's but I do have a Hiatal hernia and I had a small stricture and throat and voice problems.

Please keep us posted how you are doing.
Avatar universal
I've been on Prilosec about 5 or 6 months now, 40 mg in the morning, and 300 mg of Axid before dinner. My symptoms were much different than those I've read here. About a year ago, I started to feel like there was something stuck in my throat, like a post nasal drip, and my breath was not good. I was treated for thrush, sinusitis, and allergies, to no avail. Finnaly my doctor had the idea the feeling in my throat may be coming from my stomach rather than somewhere above. 20 mg of Prilosec did nothing. I had an upper GI done which showed GERD, small hiatal hernia, and esophagitis. 40mg of Prilosec were ordere and it did a little help. It wasn't until I DRASTICALLY changed my diet and added the Axid that things changed. I wanted to list for others the foods I had to cut in case it might help someone else: not ANY type of processed meat or red meat (no hot dogs, no lunch meat, etc.), no coffee, no soda (whether caffeinated or not), no olives or pickles, no citrus, no fatty foods (mayo, oil,etc.), no cheese, no chocolate, and the hardest for me, no alcohol. Of course I cheat at times, but I feel so much better when I don't. This past week , between 2 and 4 PM I've started having terrible muscle and head pain that lasts until I go to bed. When I wake up, it's not there. Really weird. I haven't called my doctor because I'm afraid they'll think I'm nuts considering the way it comes on at a certain time. It's like having the flu without the nausea or respiratory problems. From reading on this site, I'm starting to wonder if it may be linked to an iron deficiency from all the meds I'm taking. Can you buy iron pills over the counter? Thanks to everyone for their posts. It's been so great reading.
Avatar universal
Yes you can buy Iron supplements over the counter, but you should know that some people get stomach aches and constipation from taking them.  A good one to try is called Slow Fe, it is supposed to be tolerated better and I have had no problems taking it.  You should be able to find it in the vitamin aisle (even at Target and K-mart).  Good Luck.
Avatar universal
I also am being to feel like a nut case. i have  had stomach problems basically my whole life.My  mother relates that when i was little i wouldnt finish dinner  say i was full and cry myself to sleep. Dr's found nothing wrong.tried to tell my mom it was an eating disorder. High school was pretty much sam thing while friends pigged out i couldnt eat cause i'd be so nauseous after a small bit.Then when i was 22 had my gall bladder removed. I was pain free for son long we thought that had to be it but syptoms returned. Severe abdominal pain & nausea daily. I saw  an internist 2 yrs ago who did every test imaginable or so i thought. (upper & lower Gi series checked bloodwork for bacteria & finally an endoscopy ) He said the endoscopy showed i had acute chronic gastritis( explained to me that my stomach doesnt empty properly  thats why the bloating , pain and nausea).I've been on Prilosec and varying doses of reglan with really no changes.Finally went for a 2nd opionion and went for more testing, a gastric emptying test( i wont have the results for a few day. This doctor feels i might have gastroparesis. But as far as i can tell its a different name for same problem. Stomach  doesnt empty properly and they are treated the same way with reglan. so  if they change the diagnosis  it doesnt really matter. Meanwhile ,i miss family functions cause i'm in pain ( or to tired from the reglan) Over last yr sleep patterns are screwed up to cause i spend all nite awake in pain then have to sleep during the day, I've been out of work since Jan because of my overlapping health problems but primary phsician doesn't seem to realize how sick i am. Then of course thers the neurologist who thinks everything is in my head and i need a good pshychotherapist. By the way, i have a counselor and he thinks the neurologist is wrong. I've seen so many Dr's  and get that many different opinions. In the meantime , I'm going crazy.i'm sorry  trying to be brief but a lot of info to share /
Avatar universal
To N:  read Sherry Roger's book Heartburn Free in 30 Days or any one of her books.  You will not like what she has to say about Prilosec.  Prevacid is way safer but still does the same acid blocking.  It is curing the symptom, not the cause.  Roger's newsletter Apr 2001 Total Wellness, lists the 5 most abused drugs in the US.  #1 cumadin #2 Prilosec.  Prilosec can indeed stop heartburn but studies show that it increases the chance of bowel cancer 43 times.  Depends if you think that is a good trade off.  Not me.  The best patientis one that is informed enough to understand the consequences of the doctor's action.  Good luck.
Avatar universal
i have had heartburn related pain for 2 years. doctors took out gall bladder.  problems got worse.  had to endoscopes.  on 40mg prilosec 2x a day and carafat as needed.  the problem i really have is very sharp pain just at the top of the stomach, which intensifies. radiates through to the back(bra line), into the shoulders.  sometimes i get nauseated, sweaty and feel like i am being crushed in a vice,yet my ribs feel like they are being pulled outwards.  these "attacks" can occur 3-4x aweek or not have one for 3 weeks.  they last for 1-7 minutes.  doc says is gastritis and esouphagitis(spell).  i do not feel prilosec is helping as i still take over the counter antacids as well.  Is the GERD?  anyone with these type of symptoms feel free to email me ***@**** these attacks are very scary.
note:  heart is in A-1 condition.
Avatar universal
Although my comment concerns my overall case, I am currently taking prilosec to combat acid reflux.  My initial patient complaint was that my appetite is very weak.  I weigh 110 lbs as a 28 year old man.  First of all, I'm not anorexic; I know I'm skinny and I wish to change that.  My case is all the more complex because I was born with a congenital heart disease and have had two open heart surgeries.  I first saw a doctor about my appetite problems five or six years ago.  Then I was diagnosed as having hyperthroidism.  I went to get a second opinion and was told that this diagnosis was dangerous and very incorrect.  According to this second opinion, I had acid reflux.  I was put on prilosec and then propulsid; these drugs seemed to help, but I wasn't sure.  So obviously they didn't help much.  So I went to see another doctor who thought he spotted a tracheosophagael fistula during an upper GI.  However, he was never able to see it with the naked eye when he performed a upper endoscopy.  Nevertheless, t-e fistula is what he diagnosed.  He encouraged me not to have surgery because my condition was benign and not related to my symptoms.  However through my own research I found out that such a fistula would cause abdominal distention which I guessed would explain my lack of appetite.  In addition, I found that these fistulas are sometimes related to congenital heart disease. But the doctor did not want to pursue correction; my guess is that he considered me a risky case due to my prior surgeries.  But this has been a life long difficulty that I am obsessed with correcting.  So after moving recently, I saw another doctor who once again diagnosed acid reflux and prescribed Prilosec; he believes it highly unlikely that I would have a fistula.  I am now extremely frustrated; I understand the doctor's concerns about the surgery risks but I am willing to take that risk to live a more normal life.  Any thoughts?  Please help.  Thanks.
Avatar universal
A related discussion, hital hernia was started.
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