PPI S Are Not Safe!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Baza
Veteran Member


Date Joined Jan 2011
Total Posts : 513
   Posted 3/8/2011 6:04 AM (GMT -6)   
 Hi,im new to this forum,i have had acid reflux for coming onto 5 years now and when diagnosed i was started on nexium 80mg and  ranitadine 300mg,from that time i have been constantly ill.I have seen every GP in my surgery complaining of fatigue nausea,weakness,hot flushes,pins and needles in hands and feet and they say its not the medication.I seen a gastro consultant who tried me on every other ppi and h2 blocker with similar problems.The latest ppi is Pantoprazole and after 3 weeks i feel ive developed arthritis overnight and constant nausea.Had bloods done yesterday and surgery phoned first thing this morning informing me to stop the medication immediately and try to get by on gaviscon.I had tried coming off ppis 4 times in the past and have felt 10 times better but the reflux comes back and i have to start ppis again.I have had enough of these drugs and have decided to go for surgery. I feel angry with GPs who have shrugged all my problems off,i feel they have no understanding of this illness. Please dont let doctors tell you that these ppis dont cause problems,ive have proved they do!

katlan
Regular Member


Date Joined Mar 2011
Total Posts : 40
   Posted 3/8/2011 7:12 AM (GMT -6)   
Hi Bazza, I'm sure you're right. I have serious side effects from PPIs, but what's worse destroying my oesophagus or taking the pills? Unfortunately doctors think that PPIs are a wonder cure, but they're not. The big problem is they have nothing else, medically to give us. Have you considered surgery? Kat x

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 3/8/2011 7:13 AM (GMT -6)   
Baza,
 
I would like to know why your GI sent the message and what did he find on the endoscopy?
 
I am sorry you did not have luck with the PPIs as others  have posted they do not have good luck either.
 
I use Prilosec and from what i have read it is considered safe to take PPI medications indefinitely at this time. Each person reacts to medications in their own way.
 
I do understand your frustrations and keep talking with us.
 
Kindly,
Kitt
 
 
~~Kitt~~
Moderator: Anxiety/Panic, Osteoarthritis, GERD/Heartburn and Heart/Cardiovascular Disease.
www.healingwell.com

"If you can't change the world, change your world"

Baza
Veteran Member


Date Joined Jan 2011
Total Posts : 513
   Posted 3/8/2011 8:34 AM (GMT -6)   
Hi,in response to Katlan and Kitt,im am arranging to see a surgeon to do the nissen.I know the GPs have nothing else to give you but comments like "is it really that bad" and "its only heartburn" and "these tablets are only a stomach tablet and have no side effects" make me really frustrated.Also i was being told that surgery was an thing done years ago and was not done anymore.Only from doing my own research did i get any information on acid reflux.

katlan
Regular Member


Date Joined Mar 2011
Total Posts : 40
   Posted 3/8/2011 9:15 AM (GMT -6)   
Hi, I can relate totally to what you say. I don't think the docs understand at all. I'm in the UK but I paid privately to see a surgeon and have a wrap. I hope you get on ok. Kat x

miketx
Regular Member


Date Joined Feb 2011
Total Posts : 46
   Posted 3/8/2011 9:49 AM (GMT -6)   
Baza, I share your concerns. I'm on Dexilant. The published Dexilant information sheet states that Dexilant should be taken "for 4 weeks" for nonerisive GERD like mine. Yet my GI wants me to take it indefinitely? Something's not right here. If it's safe for a 32-year old to take Dexilant for the rest of his life, then why won't the manufacturer stand behind its product for that period of time?

Baza
Veteran Member


Date Joined Jan 2011
Total Posts : 513
   Posted 3/8/2011 10:23 AM (GMT -6)   
Hi,thanks Katlan,i live in Northern Ireland and am going through nhs to have surgery.what worries me is that i cannot chose a surgeon on the nhs.Do you know who your surgeon is and what experience he has,as from what ive read on this forum experience is everything.

To miketx; Your absolutely right,these ppis are only designed to heal any damage done then your supposed to stop them,no studies have been carried out for longer than a year on ppis.Theres people on these drugs for 20 years!God knows what problems theyve had and is it the ppis causing them.Ive been treated for folate and b12 deficeincy,now im having pains in my bones,previous to taking ppis i was never ill or visited my GP.

katlan
Regular Member


Date Joined Mar 2011
Total Posts : 40
   Posted 3/8/2011 10:50 AM (GMT -6)   
I don't want to worry you, but since you've asked........... the surgeon who did my wrap is considered the best round here, but it wasn't a success. He said it all went well at the time with no complications. I had a partial wrap on his advice as he said he'd had a lot of success with this and there were fewer complications afterwards. I'm due to see him again on Monday, under the NHS. I could not continue paying as I do not have private medical care. You probably need to discuss with your surgeon the options of full or partial wrap. Good luck. Kat x

Baza
Veteran Member


Date Joined Jan 2011
Total Posts : 513
   Posted 3/8/2011 11:37 AM (GMT -6)   
Hi Katlan,sorry to hear the surgery didnt work,hope you dont mind me asking what went wrong and are you getting it redone or repaired in some way,you dont have to answer this question.Thanks.Baz.

Exasperated
New Member


Date Joined Mar 2011
Total Posts : 8
   Posted 3/8/2011 11:53 AM (GMT -6)   
I am a textbook case for what longterm PPI use can do to you. I have taken various PPIs for 10 years since being diagnosed with GERD. about eight years ago they also added Librax for some reason.....I think it was because I was having nausea.

I had been on Nexium for 5 years(with few problems) when two years ago I started having a lot of problems with nausea, stomach pain, constipation and food intolerances. After 3 GI doctors, a specialist, a Psychiatrist, a dietician and a primary care doctor trying many different PPIs and various other medications and having every test that is available, I am still in daily pain of varying degrees and on a very limited diet because of all my food intolerances. I've lost 25 pounds and fight to try and keep my weight where it is now. I'm 97 pounds and 5'5".

I'm now on Aciphex once a day and Zantac 150 before dinner. My reflux is better but the burning in my stomach is the same. My newest GI doctor tried me on Dexilant but it made me sick and didn't work. He also now tells me that because of all the tests he's done that he doesn't think that I had an acid problem!! The GI specialist that I saw thought that all the years of PPI and Librax use had caused my stomach sensitivity to foods and even low amounts of acid.

I'm frustrated and confused. I can't live with the meds or without them. I'm stuck and no one has an answer for me. I've had IBS ruled in and out by different doctors. Where is Dr. House when you need him?
I don't know where to turn next and I feel like there'll never be and end to this.

I wish I had never started PPIs.

Baza
Veteran Member


Date Joined Jan 2011
Total Posts : 513
   Posted 3/8/2011 12:24 PM (GMT -6)   
Hi Exasperated,oh my God! what a nightmare!im so sorry about all your problems with ppis.I convinced theres something wrong here with all these drugs being handed out,surely these Gi doctors and GPs must know that these drugs are not right. I dont no the answer to reflux but its not PPIs that for sure.Its hard to believe with all the technology and knowledge in medicine today that something as simple as heartburn can be fixed! Too much money being made on drugs !!!

katlan
Regular Member


Date Joined Mar 2011
Total Posts : 40
   Posted 3/8/2011 1:29 PM (GMT -6)   
Bazza, nothing went wrong with my wrap. It's still intact, but totally useless at controlling the reflux. I'm see the doc next Monday and will be discussing my options. Kat x

hsmomof6
New Member


Date Joined Dec 2010
Total Posts : 7
   Posted 4/30/2011 12:01 PM (GMT -6)   
I had an episode of horrible reflux last July, ended up in the ER several times and was put on double strength Protonix. I was referred to a GI for evaluation and had an EGD and barium swallow, which were both negative. I also had some swallowing issues prior to the reflux. The GI said I did not have GERD and to stop the Protonix. I had been on it 3 weeks. I was able to stop with no problem and began feeling better overall, although I was still having problems with my voice and swallow. My PCP referred me to an ENT. He took a quick look at my throat, said it looked a "little red" (I had just had a virus with sore throat the weekend before seeing him) and diagnosed me with laryngopharyngeal reflux. He put me back on Protonix, double strength, and said to stay on it for 8 weeks. He also gave me dietary and lifestyle changes to follow. I started having symptoms with the Protonix use and at 6 weeks started developing joint and muscle pain. I saw my PCP, who said to get off the PPI and go to Zantac. By this time, I had done some research and wish I had never started those horrible medicines. I did have to use the Zantac for about a week, as I was having some acid rebound. Since that time, I have had horrible GI symptoms off and on. Gas, bloating, belching, alternating diarrhea and constipation at times, feeling full very soon after beginning to eat and loss of appetite. I have lost 40 pounds due to the dietary changes, loss of appetite, and early satiety. I NEVER had GI problems before this happened. I do not have GERD/LPR symptoms, but I do still follow some guidelines, eat small meals (of course, right now I can barely eat anything at all before I feel totally full), no fatty/greasy foods, don't eat within 3 hours of going to bed, and have the head of my bed elevated 6 inches.

I am miserable with the GI symptoms. I feel like my life has been stolen. I have horrible sleep disturbance when the GI stuff is flared up. I've only had about 10 weeks of feeling well out of the last 9 months. I've now had the last 6 weeks of GI symptoms without much relief. How I wish I had NEVER taken the Protonix. I feel that somehow it has damaged my digestive system. I'm still undergoing many tests by the GI and they can't find out what is causing my symptoms. I've had a CT of the abdomen/pelvis, gastric emptying study, gall bladder ultrasound, HIDA scan, which were all negative. I just had a CTE of the small bowel and a hydrogen breath test, I'll get those results on Monday. I've had blood testing for Celiac (all negative, except for the anti gliadin IgA antibody) and stool test for C. diff, which was negative. I've just gone gluten-free and lactose-free, which I think has lessened the gas and bloating, but done nothing for the loss of appetite and early satiety or belching. I just want my life back!

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 4/30/2011 1:09 PM (GMT -6)   
Glad to find I'm not the only United Kingdom GERD sufferer!

I'm still trying to wean myself off antacids - now just on Zantac (Ranitidine). I too wish I'd never started on them and I really think their long term safety should now be under question. I wasn't on them for long (6 months) but just in that time I had terrible side effects. I hate the choice of system wide side effects and no reflux, or fried oesophagus and no side effects! Is that REALLY the best modern medicine has to offer?? What kind of solution is it anyway; ppis don't fix the reflux, they just take the acid out of it!!

I've been discharged from my consultant - I'm not bad enough for surgery and was told to "persevere" with medication. The side effects made life unbearable so I'm on a constant quest for a natural solution. My consultant had nothing further to suggest - either medicate and suffer the side effects, or don't medicate and suffer the GERD. Maybe they just think I'll poll up in a few years when I'm eligible for surgery!

Baza - if you choose your surgeon and have a private consultation with them, they should be able to refer you to their own NHS clinic (they literally write a referral to themselves). I did that for a different problem (like who needs other problems on top of GERD?!!) and phoned the NHS appointments office and insisted on "continuity of care". My appointment was slower to come through cos my consultant had the longest waiting time, but I did get my treatment on the NHS that way smilewinkgrin

bittersweet603
Regular Member


Date Joined May 2006
Total Posts : 93
   Posted 4/30/2011 4:32 PM (GMT -6)   
In my experience I have also had problems with PPI's, I was a longterm user probably over 5 years I can't even remember I was on them so long. I would get terrible stabbing hunger like stomach pains at various times but mainly at night, my stomach would burn and I'd pass horrible flatus. When I stopped them and switched to a higher dose of Zantac this stopped. I was diagnosed with SIBO (small intestinal bacterial overgrowth) and I think my constant use of PPI's attributed to this because it inhibits your stomach acid so much that its not breaking down food like it should and ferments in your gut. I also have had several bouts of gastritis with no medical finding on why, but I also think it has something to do with constant use of antacids. I am hoping once the NF is done it will limit the use and cure some of the issues along with overuse of antacids. Vitamin depletion, especially B vitamins are another issue they cause.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7180
   Posted 4/30/2011 6:29 PM (GMT -6)   
Hi All,
I'm sorry to hear so many of you have had such trouble with PPI's and other reflux meds. I have taken them for years without any such problems. I'm sure it's very individual. I would rather to never have taken them, but unfortunately, the alternative was far worse.

I wish you the best. Hopefully surgery will make it unnecessary for you to take any further medications. Many find that to be the case, while others continue to need a lower dose after surgery.

Best wishes to all,
Denise

lilfox
New Member


Date Joined Apr 2011
Total Posts : 13
   Posted 5/1/2011 3:04 AM (GMT -6)   
I have been on ppi's for almost 15 yrs nexium was the last kind...I have had dirriea and stomach pains for about 11 yrs now doc said it might be the nexium I had my wrap and doc said I can go off the stuff next tuesday for good I hope, cuz i now have brittle bones from the nexium so try not to stay on the drugs for a long time its not worth it...was on prilosec, then acisipex then nexium since 1995...now my bones have osteorprosis...cant spell it but its a side affect so take caution when using ppi's...I will let you know how it goes with no ppi's hope no more heartburn cuz I have barretts from the gerd and have to be carful now and have the thingy down the throat done every year now...u all TC cheri

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7180
   Posted 5/1/2011 8:05 AM (GMT -6)   
Hi Cheri,
You're right about the bone density issue. It's extra important to take Vitamin D, get plenty of calcium, and do weight bearing exercise. I have a double whammy...because of asthma I take (since surgery only a small amount..before an unhealthy, large amount) of steroids.
Good luck strengthening your bones!
Denise

Baza
Veteran Member


Date Joined Jan 2011
Total Posts : 513
   Posted 5/1/2011 1:39 PM (GMT -6)   
 
 Hi Everyone,havent been on the forum for a while,i am off all meds now for 9 weeks and i feel great,taking peptac after every meal,no eating a night,but i dont now how long it will last.Being on ppis the last 5 years has ruined my life,it totally changed my personality.I feel back to myself by not taking ppis,just waiting on surgeon now,hope he can help!I never want to take a ppi ever again,i think its form of poison! Baz.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7180
   Posted 5/1/2011 3:42 PM (GMT -6)   
Hi Baz,
I'm so glad you found an answer to your problem. I'm happy to hear that you are feeling like your old self. Best wishes--I hope you find a great surgeon. Be sure to choose one who is extremely experienced (300+-1000+ procedures under his belt) in the Nissen procedure.
Thanks for sharing your journey with others here.
Denise

Baza
Veteran Member


Date Joined Jan 2011
Total Posts : 513
   Posted 5/2/2011 3:57 AM (GMT -6)   
 
  Hi dencha,thanks very much for your response.Im afraid im on NHS over here and i have no choice of surgeon,im relying on my consultants choice,its also impossible to find any information on surgeons here,all i can do is ask the surgeon when i meet him and go from there.Hopefully things will be fine,i dont believe i would be referred to someone who has no experience.Thanks.Baz.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7180
   Posted 5/2/2011 6:41 AM (GMT -6)   
Hi Baz,
I know there have been several members here who are from the UK and used an NHS surgeon with very good results. Have you seen any of their posts?
Denise
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, April 25, 2018 8:39 AM (GMT -6)
There are a total of 2,955,433 posts in 324,221 threads.
View Active Threads


Who's Online
This forum has 162225 registered members. Please welcome our newest member, abhi24x7.
357 Guest(s), 15 Registered Member(s) are currently online.  Details
Craftylady, sandyfeet, tickbite666, Hoagie, 1000Daisies, Ox123, Skypilot56, jmadrid, hrpufnstuf, RobLee, OriolCarol, Busted1, three 5's and a jack, elvin, iPoop