- Queazy RiderParticipantAugust 12, 2014 at 9:55 pmPost count: 2
I’ve been on PPI drugs now for over 15 years for GERD/LPR and I’ve tried a couple of times in the past to ween myself off of them without success.
I was wondering if anyone here that has tried the FTD has been able to come off of the PPIs completely after many years of use (10 plus years).
I currently take 15mg of Prevacid once a day so my dosage is low, but I’m still convinced that the stuff is causing many of my problems.AndreaSParticipantAugust 13, 2014 at 8:37 amPost count: 52
Hi Queazy Rider, welcome to the FTD forum 🙂
I cannot answer your questions, but I wanted to suggest that you provide us with more details about your symptoms, in general and also of times where you took no PPIs.Queazy RiderParticipantAugust 13, 2014 at 3:55 pmPost count: 2
Back in 1999 I went to the family doctor because of a cold and checked off on the symptom sheet that I experience heartburn. I had experienced heartburn on and off every since I was a teen. The doctor felt that I needed to go have a barium swallow test done and that revealed that I had quite a bit of reflux going on. As a result he put me on Prilosec once a day. Knowing what I know now I wished I would have never checked that box off on the sheet!
Over the past 15 years I’ve been on just about every brand/form of PPI drug and the dosage has also fluctuated. Some worked, some didn’t and some stopped working over time. While on the PPIs I don’t experience heartburn, but I do experience a lot of upper throat issues…mainly irritation and burping. Most recently back in December 2013 I started having trouble swallowing. It felt like food that I swallowed would not go very far past my upper throat after swallowing. I’d have to drink something with each bite. I never had food or water come back up, but you could definitely tell that the food was not going down as normal. Pryor to that I had started having night time reflux which never caused heartburn symptoms, just mainly throat issues. My doctor had me do a barium swallow with tablet which came back fine. He wanted to go ahead an do an EGD with dilation to see about sorting the issue out.
I’ve had 5-6 EGDs done over the years and they always have shown no sign of Barrets and that everything looked fine with the exception of polyps here and there that were removed. I’ve even had the EGD done with the PH monitor twice.
So in January of this year I went in for the EGD with dilation and the doctor said I had a mild stricture and he dilated it out to the maximum amount that he could. It took about 3 weeks before I felt any relief and that only lasted a couple of weeks before I started back in with the sensation that food was being stuck in my upper throat area. I went back to him and he had me do a modified barium swallow test with a speech pathologist. She watched my swallowing mechanism and said that it all functioned beautifully.
So I go back to the GI doctor and he tells me that he doesn’t think that I could have another stricture only 2 months after the dilation. He ended up referring me to an ENT to see if they could help at all.
I visited an ENT and after describing it all to him he said it definitely sounded reflux related and his recommendation was to double my Prevacid dosage each day and stay away from trigger foods. He said it can take up to 6 weeks for someone with symptoms like mine to see any relief from the upped dosage of Prevacid. Another suggestion was to have some procedure done where they cut the muscle in the upper esophagus that closes off when you swallow. He said that sometimes that muscle will spasm and stay shut when it should be opening. This can cause food to get stuck in the upper throat. I didn’t really like the idea of cutting anything and I wasn’t sure that taking more PPIs would help either.
I’ve pretty much tried everything over the years that people recommend….eat vegan, take enzymes, DGL, sleep on a wedge pillow, no eating/drinking 4 hours before bed, etc. and haven’t found much relief. I have a tendency to think about health issues way too much and I know that stress plays a big part in how this stuff goes.
I also end up having heart palpitations when things in my throat are really irritated. Other health issues include ongoing foliculitus which I’ve battled for just about the same period of time as reflux and I’ve had a few panic attacks over the years. I’m a 43 year old male and I’m not over weight at all, but I don’t exercise regularly either. I pretty much sit at a desk all day long staring at a computer. I’ve got a wife and three younger children and I commute 30 miles each way to work every day.
I can’t help but think that many of these symptoms and issues that I have are related to taking these stupid drugs for so long. I have concern for what they may be doing to my body and at the same time I’m concerned about the condition of my throat. When I’ve tried to ween off of them I do start getting the classic heartburn symptoms after 3-4 days of trying.
Once you’ve dealt with this as long as I have and tried so many things, it has a tendency of just becoming a complicated mess in your mind and it’s difficult to know what to do anymore.
Was hoping someone with a similar experience as mine might have some input on getting off of PPIs or how the FTD has changed their lives.JIParticipantAugust 13, 2014 at 11:27 pmPost count: 180
Hi Queazy Rider–I weaned myself off of Nexium, but did it slowly. I stepped down to lower and lower doses of Zantac until I was taking none at all to prevent “rebound” heartburn from abruptly stopping all meds. I was only on Nexium for 5 momths, but I developed SIBO (small intestine bacterial overgrowth), I believe from too little stomach acid. The Nexium and dietary changes did not help me a bit, but the Fast Tract diet gave me some relief.
I started having burning throat issues instead of heartburn, and saw a surgeon who does the Linx anti-reflux surgery. She ran a battery of tests to see if I was a good candidate. The manometry showed that my LES was not always opening. She did a Botox injection to try to correct the problem. The doctor advised me to do yoga and relaxation exercises to get my LES out of spasm. She said the Botox injection would not do harm, but might help. I did not notice an appreciable difference.She also observed that my LES opens when it should not during an endoscopy. The 24 hour Ph monitoring showed that I do not have much reflux, and that it is non-acidic. No wonder the PPI’s did not work!
I wonder if you also have non-acidic reflux. It is hard to find information about this condition, but it sounds like two recommended courses of action are to have anti-reflux surgery (although there are conflicting reports about whether this works, and it is extreme) and using Gaviscon Advance. I order it online as this formula of Gaviscon is not available in the United States. I occasionally use it right before bed, and it helps when I am having a bad day. Some days are better than others.
My surgeon doctor told me that based upon my test results, she knows the Linx surgery could help with my burping from the LES opening, but does not know if it will help with the throat soreness. I am awaiting news about the Endo-stim procedure to regulate LES function. It is currently done in other countries, but will be a few years before it comes to the United States. I have no evidence of damage to my esophagus, throat, and vocal cords despite the throat soreness, and I have been having symptoms since the beginning of 2013. I am thinking that I can wait for the Endostim to come instead of the Linx surgery, which leaves many people with swallowing difficulties.
For now, my best advice to you is to nourish yourself well, and do relaxation exercises as stress will not help you at all. Ask a surgeon who does anti-reflux surgery about a Botox injection to the LES. Walking is good exercise overall, and helps the LES. You can look up information on the Peoples Pharmacy website about weaning off of PPI’s. Good luck, and I hope you find relief. You will certainly receive help from this forum.AndreaSParticipantAugust 16, 2014 at 11:18 amPost count: 52
Queazy Rider, I am having meteorism for at least 15 year & reflux for at least 5 years. I am no M.D.. After reading your story, my advice is to consult Norm Robillard. I’d ask for a gastroenterology specialist in your area that is open to Norm’s approach. My (wild) guess is that a reduction of PPIs combined with FTD might very well _not_ change your symptoms, but that’d be quite a progress! If you are lucky, they might even improve. Anyway, personally, I’d not do this without ongoing consultation.
And I agree with JI, there’s some fantastic magic in walking. If possible, do it. You don’t have to go as far as Linus Torvalds who attached a PC to a treadmill 😉ronnieParticipantAugust 21, 2014 at 9:39 pmPost count: 18
I was on 40 mg of pantoprazole for 2+ years for reflux, and weaned myself off completely in about 6 weeks by following Norm’s diet carefully. I still take 150 mg of zantac at night before bed, but am hoping to cut that down to 75 mg. Sure beats the PPIs, and at least I know I have some acid back in my GI tract digesting my food…I feel 1000X better also.AkaveryParticipantSeptember 25, 2014 at 9:16 pmPost count: 9
Ronnie, I’m currently on 40mg of Pantoprazole as well and I believe it has recently stopped working because I am getting burning in my throat again and coughing on stuff coming up alot. I’ve been on PPI since Jan of this year. How did you lower your Pantoprazole at first? Do you take it morning and night? I’m really nervous because yesterday I got brave since I’ve been cutting out grains & sugar (only about 2 or 3 days so far) and I decided to skip my morning pill. Boy that was a bad idea! I thought I was doing ok, but I ended up with heartburn in the evening and had to take my pill at night because it got bad and then I was up all night with reflux that kept making me choke! Ugh! The whole weaning process seems scary. Just how did you go about it? Thanks so much for sharing!GregHParticipantOctober 9, 2014 at 3:42 pmPost count: 1
I used Prilosec for about 20 years. It was especially easy given the OTC designation and the continual media blitz. But the implications for other problems just seemed too compelling albeit, not 100% conclusive.
Having searched for alternatives, I finally stumbled onto using apple cider vinegar. I’m not particular fond of so called natural cures, as I find most of them either are outright snake oil, or have little effect. But I will say that I’ve been off of PPIs for over a year now and the vinegar works better than anything I’ve tried, bar none. And it’s fairly immediate. It may be that it affects the stomach contents but my impression is that it also causes the sphincter (LES valve) to temporarily tighten up, thereby not allowing stomach acid to reflux.
I typically use about 1 tablespoon in 6 oz of water, and do that twice a day (morning and night). I supposed one could do it more often as well. This is the typical bottle of apple-cider vinegar you find in the grocery store (5% acidity). I read to rinse your mouth afterwards with water, because of the acidity but found no evidence that it’s necessary.
Lastly, I also increased my acid by taking Betaine HCI 350mg (hydrochloric acid pills with Pepsin). The premise is that many people with GERD actually do not have enough acid, the food sits in the stomach and “stews” causing higher pressure in the stomach which in turn, causes acid to go back up the esophagus.
Just doing these two things has made a world of difference and both are very inexpensive ways as a possible alternative. Google the use of the HCI to understand how much to use however. They generally have you start out with up to 3 pills with each meal until you feel a slight burning. Then you back off the quantity until there’s no burning. That becomes the amount one uses.
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