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EPI meds expense
On Medicare, Medicare supplement and Cigna scrip insurance. My meds are NOT covered. I appealed and my appeal was denied. The “discount card” is not for Medicare patients. I cannot afford my medicine as it costs more than I even receive from SS. I don’t know what else to do. I was misdiagnosed for 30+ years and now that we have finally found a med that works I cannot afford it. I don’t know what else to do. Maintaining weight is not working, currently at 106. with osteoporosis and anemia due to the long term misdiagnosis. I am willing to try just about anything at this point.
I realize I’m not the only one but I live in a small town and just found this group. Any suggestions or help would be appreciated. I’m embarrassed that I cannot afford my medicine and while I know that there are other people my age experiencing the same issues, I just never imagined that it would be me too.
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Company for Creon is Abbvie.
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1 ReactionYes. I applied for assistance and got it. They now ship to me free. Had to fill out form& my Dr had to answer their questions. It has definitely helped slow my output.
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2 ReactionsDid you try being on a VERY strict Low FODMAP diet? It helped immensely. I am having improvement with 6 meals a day, but the hardest part is staying down at 1600 calories, as well as small portions. It is easy to eat too much of something and have issues, as you described. I am on Creon as well, and take one dose with each meal. There is still some gas/constipation/diarrhea overflow, but the improvement is significant for now, fingers crossed.
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2 ReactionsYou can ask your GI doc to order a hydrogen breath test to diagnose SIBO. There are 3 different types (I believe) and the test can differentiate them. This is how I was diagnosed. I am having a hard time getting past SIBO tho. I am currently on long term antibiotics though, which I know you don’t want to have to take.
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1 ReactionHi I have EPI after having pancreatic neuroendocrine cancer and surgery and have now been on Creon for almost 3 mos., which has helped me significantly! I don't know how old you are, but I am on Medicare. I now have an AARP Medicare RX supplement through UnitedHealthcare that has covered the whole cost of Creon this year for me. I've had some other RX expenses to where the Medicare $2000 RX cap has been met (see https://www.panfoundation.org/understanding-the-medicare-part-d-cap/), but I think without that, my cost would have been $136 co-pay for my initial first 90 day supply, then $0. So, if you're on Medicare, you might at least want to check this out for next year. Hope this info is help!
PS I almost forgot. ..Also check out Healthwell Foundation https://www.healthwellfoundation.org/about/what-we-do/. They provide financial assistance through grants for certain chronic diseases. Walgreens told me about them and I got grant approval thru them for another med I'm on. The diseases are listed https://www.healthwellfoundation.org/disease-funds/.
I have a zoom appointment with a naturopathic doctor tomorrow, so I’ll ask him about that. I can’t believe my regular doctor didn’t order that for me. Yeah, I wouldn’t be able to take long-term antibiotics because I always become allergic to them, but I have read there are herbal remedies that are almost as effective. I hope so. It sounds like it’s a difficult thing to get rid of. I hope you get some relief! Thanks so much for the info.
Hi everyone!
After 32 years I was finally diagnosed by a Registered Dietitian (even though my GI tested me in 2021 and 2023 through fecal and blood tests, both yielded “normal” results) with Exocrine Pancreatic Insufficiency (EPI). I’ve started Now Super Enzymes and felt relief the same day! My bloating, gas and cramping drastically reduced. After 2 weeks, I’m starting to see bloating increase and I’m feeling discouraged! My GI prescribed Zenpep and I’m just waiting on my RD to agree to switch to Zenpep. Has anyone else delt with extreme bloating and have success with Zenpep? My RD is confident that if her hypothesis is correct and I do have EPI, I can live a symptom free life.
I also have hashimotos, rayneauds, and gallbladder removed.
Thanks!
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1 Reaction@andinatalie
I don’t believe registered dietitians are able to clinically diagnose. They have a bachelors degree and dietitian license but limited in what they can do compared to a medical doctor.
Did your gastroenterologist do bloodwork, ultrasound, MRI, endoscopy and colonoscopy? Have they ruled out pancreatitis and any issues with liver or post gallbladder removal? Have they ruled out celiac disease?
Are you seeing an endocrinologist for Hashimoto’s and are you being treated for hypothyroidism? Are you working with a rheumatologist to see if you have any other autoimmune diseases contributing to your symptoms?
@andinatalie
I also meant to mention that registered dietitians are not usually able to prescribe medication so you should not depend on them on making decisions about doctor prescribed medications. Your specialist doctor is the expert on gastroenterology and medications, not dietitians. If you would like to, you can get a second opinion by a different gastroenterologist if you don’t believe you are being heard about symptoms and getting the right testing/diagnosis/treatments. Dietitians can definitely complement doctors’ diagnoses and treatments by reviewing diet and supplements/medications to make recommendations on changes to diet and supplements but not medications.
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