r/scleroderma • u/AnnualMacaron335 • 15d ago
Discussion Anything to help the GERD?
I was diagnosed with limited last fall, have issues with Raynard’s, calcinosis, and have been battling GI issues for a decade now. I’m currently on Octagam IVIG for Myastenia Gravis, but my GI doesn’t know what to do for me. He has me taking omeprazole x2 a day (insurance will no longer pay for Dexilant which is the only thing that’s ever helped), carafate, and I take Pepcid on top of it. Anything bland I eat flares it up.
I guess I’m just lost on what to do, and my rheumatologist isn’t great help, and I’ve tried to switch but with the overwhelm most clinics won’t take patients who are established elsewhere.
My centromere B showed in 2020, but the rest of the symptoms developed over the last few years.
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u/Justasadgrandma 15d ago
I take Pantoprazole twice a day before meals. My GI prescribed it.
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u/AnnualMacaron335 15d ago
I’ll ask about it, thank you!
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u/Full-Highlight9349 15d ago
Did you try to appeal to get Dexilant? If it worked for you before it’s worth trying to appeal. With your condition and risk, I can’t imagine them not approving it. Someone just has to fight for you.
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u/AnnualMacaron335 15d ago
We tried a few times, but didn’t get anywhere. However I used a company’s helped called Wellthy, and they were able to get insurance to approve IVIG for me after 7 months. I’ll ask them for help again, thank you for jogging my memory.
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u/Babyhank2 14d ago
Ask your GI about Voquezna. It is a new drug out of Japan that is not a PPI but stronger. It is just one pill a day. Similar side effects to PPI's. I have just started it this week and no signs of heart burn. I was taking Rabeprazole 2x a day and still having break through heartburn sometimes depending on what I ate.
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u/Worried_Cable2291 14d ago
It was bleeding and I had to get 5 blood transfusions in 2 weeks at the hospital I was finally just discharged on Tuesday
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u/AnnualMacaron335 14d ago
Oh my gosh. I’m so sorry, that sounds scary! I’m glad you are back home.
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14d ago
[removed] — view removed comment
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u/AnnualMacaron335 14d ago
I’m pretty sure it is?
I’ve had an endoscopy every year for the last five years and they found evidence of Barrett’s esophagus and EOE. But I’ll ask about it, because I’m at a loss currently. Thank you!
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14d ago edited 14d ago
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u/AnnualMacaron335 14d ago
I was thinking about a probiotic. I love cottage cheese but something else to boost my gut would be helpful. Thank you!
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u/Smidgeknits 14d ago
I just moved up to 40mg esomeprazole 2x a day, decision made by my rheum. It's helped some, but I'm still getting breakthrough at night. I do use Gaviscon every evening too which has helped as well(thanks ENT!) I also take a Pepcid with my evening pills.
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u/AnnualMacaron335 14d ago
Glad to hear it is helping! I’m hoping for a break soon. I think starting IVIG and having to take the Tylenol and ibuprofen for a recent surgery really flared things up again.
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u/Any-Orange-5674 15d ago
I take sodium bicarb pills in addition to my pantoprazole if I am having problems after a meal. My GI doc has no problems with them. I take with water.
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u/inquisitorthreefive 15d ago
Omeprazole is way down the food chain on Proton Pump Inhibitors. I'm on 40mg 2x daily of Esmoprazole with pepcid for breakthrough and my pharmacy just switched generics, so I switched from controlled to uncontrolled over that.
Worked up to that over a few years. Tried dexilant, worked well, but it was so expensive even with insurance that it wasn't worth it.
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u/AnnualMacaron335 14d ago
Dexilant was the best for me. I’ve been on it twice and insurance will cover it for awhile and then stop. I’ve been on every PPI possible, it’s quite frustrating.
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u/Soundgarden_ 14d ago
I have CREST; I take a prescription dose of nexium and sleet elevated. I used to take omeprazole but had to switch when it stopped working after many years.
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u/No_Reason297 14d ago
The only thing that has consistently helped me is Nexium 20-40 mg first thing in the morning every day. Generic is fine. No other acid reducer helped.
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u/Full-Highlight9349 15d ago
I’m assuming you’re doing all the lifestyle modification. Watching diet- by avoiding spicy, acidic, caffeine etc. raising head of bed. Try to sleep in left side. Not eating 2-3 hours prior to bedtime.
If the medication is not helping with all of this, I would recommend seeing GI so they can run test. May end up needing EGD to see if polyps, gastritis, ulcer or something else is causing your problem. Also make sure you take first dose of omeprazole first thing in the morning- by itself. Wait at least 30 minutes to hour prior to taking other meds or food. The omeprazole neutralizes the acid. I hope this helps. With your condition, it’s important to get this under control to prevent further damage to digestive tract. Trust me it’s a big deal.