Trying to wean off Pantoprazole, does anyone have suggestions please?

Hello all:

I really appreciate finding this forum and seeing discussion threads on GERD.

Okay, first just some background info on why I'm on Pantoprazole. In Jan. 2023 I recognized GERD symptoms based on an occurrence in 2006. I was lucky to not have bothersome symptoms in years and THOUGHT anyway that it was abating from Chinese herbs and acupuncture. Only on 2/3 I suffered a traumatic injury (I'm doing better from that by the way) which affected nerves to the tongue, affecting eating and talking. At that time I was terrified and the GERD symptoms which had not been bothering me, suddenly changed dramatically. So first I tried Prilosec at the suggestion of PCP, that sent me to the ER with a bad reaction after about a week. More terror. Stopped cold turkey for a couple of days, tried Pepcid, it wasn't enough. Perhaps I was already having a rebound symptom, but the GERD got SO bad that it burned my voice box and then I finally got a GI consult. He immediately placed me on a really challenging regimen: A) Diet to reset my GI tract, starting with just water (that's all I could tolerate for a couple of days), then clear liquids, then thick liquids, then pureed food, then solids. Only foods allowed were low FODMAPs and avoiding GERD triggers. The ENT doc said I also needed to be on low acid because of how bad the throat was. So... very very limited diet. B) The meds: initially 3 Zofran a day (thankfully I rebelled and weaned myself off between week 6-8), and 2 Pantoprazole per day. It was thought to be necessary to stay on such high dosages because it would take approximately 8 weeks to heal the burn, and months of speech therapy to rehab the voice. Okay, also my voice is really important as I teach for a living and also am a singer. Oh, just adding this because a Moderator caught that I hadn't mentioned it in my first post -- I had an endoscope at the end of February, and the results were completely NORMAL. No hiatal hernia. No damage to the esophagus. Nothing.

At week 8, the GI doc said it was okay to try weaning off of the Pantoprazole. So we dropped immediately to 1 per day. I actually did okay there, for 5.5 weeks, with just one little hiccup that prompted me to take a Pepcid regular strength. I managed symptoms otherwise with just Mylanta. Only that one time did I have a burp with a sore throat. The one little Pepcid dose resolved it within minutes.

So then the GI doc said to try every other day, 1 pill. He said very clearly that if I couldn't manage symptoms with TUMS, to resume daily dosing asap. If you count the dropped dose day as day 1, I made it to day 12 and had an episode at 5:15pm that was stronger, but I recognized the need immediately to take a Pepcid. I endured maybe a half hour or so of painful burping and then it was gone. But I felt very up and down during that first try.

Because of that, GI doc said to go back to daily dosing for about a week and try again. That second time it felt like things were going so smoothly. Felt great. Made it to day 18, and then at about 5:15 or so I started getting a bit of a sore throat, enough to make me not want to talk much. There was no burping as yet so I wasn't quite sure yet if it was GERD or perhaps just voice strain or a virus. The burping started later but was rather mild. So I was really confused and just took TUMS and Tylenol. Seemed to be okay when I went to sleep.

Then I woke up at 3am Sunday morning with a really REALLY sore throat. To the point that I had little interest in eating that day, but it didn't hurt to swallow, so I ate anyway. Worrisome since I had gone back to lightly teaching and wasn't sure what this would do to my voice. Well, I took a Pepcid and 2 Tylenol at 3am and then decided to go back to daily dosing until I could hear back from my GI doc. He told me that this was a natural occurrence of weaning off of the meds and that I'd just have to decide if the discomfort was bearable to push through, and if not, then I'd have to reconsider weaning.

Well on Sunday, Monday, and Tuesday I took 1 Pantoprazole, 1 Pepcid regular strength, and a couple of Tylenol. I can't say for sure but I think anyway that I've stabilized a bit on the sore throat or at least I'm doing a lot better than the past few days.

He really didn't give any advice other than to manage symptoms with TUMS and said okay fine take Pepcid to manage symptoms. He left things up to me this time and so I decided to stay on daily dosing for a little while anyway before trying again and considering some strategies.

I have already been going to acupuncture since early April, have throat coat tea which has marshmallow, slippery elm, and licorice in it. Sent away for chewable DGL, hoping it will help. I'm still on mostly low FODMAPs, plus low acid and anti-GERD diet.

Not trying anything by Gaviscon after I had a really bad experience with the regular stuff in February. Nor will I do Prilosec, I ended up in the ER on that stuff in February.

I really truly want to be off these meds if it's possible. Before I try again with the weaning, I'm wondering if anyone will see this and have suggestions.

Thank you in advance. Mahalo and Aloha.

Post Edited (Petite Polynesia) : 7/6/2023 8:00:54 PM (GMT-8)

Sharon, thank you for replying. I had an endoscopy at the end of February, the results were NORMAL. No hiatal hernia, no injury to the esopagus ... nothing. 2 GI docs looked at the scope results and concluded that I had nothing mechanically wrong and that the GERD was entirely emotional in nature. I said yeah no kidding, I kept trying to tell all of you doctors that I have a neuromuscular injury affecting the tongue and you all keep telling me it's just a GERD symptom! It's not! Still... crickets... I had to fight for a Neuro consult and speech therapy after the injury, took 2 months. I took care of the injury myself by going to an Osteopath many times, lots of acupuncture, Chi Gong, etc. I finally got a Neuro Consult in mid May, more than 3 months after the injury (all I can say about that is that she agreed, I was accidentally, physically injured). As the injury gradually got better, the anxiety of course was going down too because normalcy seemed within reach. And I've also found an amazing therapist who did hypnotherapy, taught me Chi Gong, not your typical therapist. A real do-er, someone who understood that "talking out out" was not going to do anything and besides... it was physically painful to talk for about 8 weeks after the injury. And I've also learned a lot of bodywork therapies to manage stress and anxiety. Now, it's just a matter of ... is it possible to wean off the meds.

Post Edited (Petite Polynesia) : 7/6/2023 7:59:39 PM (GMT-8)

Ah, thank you Sharon. That does help. Well, the GI Doc did say that it was possible to try alternating between 40mg and 20mg of Pantoprazole and then if that's successful going to 20mg daily. A more gentle taper. But I have to stabilize. I thought things were all fine but not quite yet. I thought I could handle things with just TUMS on Saturday night. But then on Sunday early morning the throat pain was pretty intense so I took a Pepcid and resumed daily dosing of 40mg Pantoprazole. Needed some Tylenol for the pain. After Sunday, Monday and Tuesday were better but still needed a Pepcid and some Tylenol... when the throat pain started I just took a pepcid and tylenol, they happened at different times of the day. Wednesday and Thursday, felt quite good on just the Pantoprazole. Thought maybe that was going to be it for the rebound but then a wave hit me today, Friday. Wow. Very burning throat and strong burping. Took a pepcid and Tylenol as soon as I could. It's been a few hours and the throat is still irritated. Bummer. Who knows what tomorrow brings. It seems that nobody can really say how long this rebound will actually last. But after I stabilize, I will try the more gentle taper. I'm wondering how long I should wait till I figure out if I am stabilized. Maybe a couple of weeks after the last symptoms of this rebound? I'm trying to dance with this, at least thinking of this as a dance makes it sound more fun. Also, I have rarely had GERD symptoms. Some in 2006, then not for years. And if I can wean off successfully, then if the symptoms come back I'd prefer to try an H2 blocker. Also, this was an extremely unusual situation. Any thoughts on this?

It's good to see the post has some views but why so few comments?

You know with internet accessibility and people always on their smart phones, it's an incredible disappointment I think to people who need help, not even getting a one or two sentence reply...

All I was really looking for when you get off PPI's and there's no more acid rebound, but your stomach is sore because it's now getting used to having the full stomach acid complement, how long does that stomach soreness last for?

2 weeks? 4 weeks? 6 weeks? What was their experience?

One person wrote and said it was six weeks in their experience but sadly they were the only ones that replied. Nonetheless thanks for your attempt to explain as the forum moderator. The truth is pain and illness really takes no holiday for people who need help.