PPI S Are Not Safe!

 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!

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

 

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

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.

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.

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 !!!

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!

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.

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

 

 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.

 

  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.