Anyone taking PPIs?

Thank you. I also have a small hiatel hernia so I guess I’ll do drs orders! At least for now.

@rashida how small is your hernia

Hello @cpolich,

You provided some helpful information about dealing with MAC. As this is your first post, I would appreciate learning more about your journey with MAC. How long ago were you diagnosed?

I too have a hiatal hernia with acid reflux. My md has me on a H2 blocker (famotidine) or Pepcid, and not a PPI. My understanding is H2 reduces stomach acid and PPIs shut down acid producing pumps. I’m curious as to why some doctors use PPI’s and others use H2 blockers. Guess it’s a question for my GI doc. Is anyone else on H2 blockers or know which could be the best long term?

@hopeful33250 Thanks for asking about me! This is a very nice support group! I’m still at times in denial and try to pretend that everything is normal (whatever that is). I was diagnosed with MAC and aspergillosis about a year ago last October after a hospitalization for pneumonia and a hemorrhage in my left lung. I was treated with Voriconazole for 3 months and the aspergillosis appears to have resolved. The MAC was monitored for the next 8 months. I had some mild progression on my CT scan (increased nodularity throughout and bronchiectasis) as well as a few changes in my symptoms, so I started the 3 antibiotic routine 3 times per week. I am a little more than 5 months into treatment and unfortunately still have positive cultures. I’ll see my ID specialist in a few weeks to figure out what’s next. I’m a dietitian (retired now for about a year) and have treated a couple patients with MAC for malnutrition. So, I do have some previous knowledge of MAC but am learning more everyday. I’m looking forward to hearing more about others on this site and sharing information.

@lilianna I don’t know, but I imagine small enough not to warrant surgery (outcome of which I have been told can be worse than the GERD) but “big” enough to warrant PPIs to keep GERD and Barrett’s Esophagus at bay.

I am not a fan of prescription medications but PPIs are one of those unavoidable. At 79, I pick my battles and choose which hill to die on. lol!

@patti55 I started on an H2 blocker (can’t remember which, because it was over twenty years ago) but my doctor decided in the PPI because the H2 blocker eventually stopped working.

@rashida thank you

@patti55 I’ve been on Fanotimine (Pepsid) for about a year now. I went back on this at the recommended of my GI Dr when I became aware of the risks of GERD with a MAC diagnosis. I had stopped taking Nexium and other meds a while back as I was concerned about the long term side effects however my Dr feels this is safe. I did ask about PPis but was told to stay on this without an explanation why this is preferred (at least in this practice group). I just starting splitting my dose and taking half in the am and half at night as they only last 12 hours and I was having a lot of daytime breakthrough.

I, like so many, I have.been on a PPI twice a day for more than 30 years. A recent trial of Sporonox for Aspergillus required that I alter the regimen to leave 2 hours between the doses of each to insure efficacy but the outcome was difficult to control heartburn and difficulty swallowing. At the recommended Sporonox dose of 200 mg BID I was bedridden with nausea and vomiting but when the dose was decreased to 100 mg BID the blood levels were too low. So now I am on nothing and waiting for the next step. Some of us are just going to have to stay on PPIs. My GI doc said that the next management option was surgical.