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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I made rice pudding for several days and take it with enzymes coconut sugar and little acacia honey.
It bulks up the loose stool and make me feel way better as I lost 8 pounds in 3 weeks
Keep your head up
Have you tried Colestid or any bile salt medicine? These are much cheaper and they help with absorption.
I was diagnosed with pancreatic insufficiency post Covid and lost 60lb's in 2 1/2 weeks. Was taking pancreatic enzymes 4 pills 4 times a day with not a lot of results. Started Colestid and it has helped quite a bit.
I was going 10-15 times a day to now 3-5 times.
Ask your doctor if they think it might help.
I was recently diagnosed with Exocrine Pancreatic Insufficiency (EPI) and my doctor prescribed the prescription enzymes, Creon 24000. However, even with my insurance, my copay would be $851 per month! So I did some research and found one company that makes a functionally equivalent, over-the-counter version of Creon. This product is called "Micrazym 25000 USP." It is manufactured by AVVA Pharmaceuticals Ltd., which is based in Europe and is now available on Amazon.com at a current cost of less than $50 for a 50 capsule box. (See link to this product at https://www.amazon.com/dp/B07GWJ3QJK?ref=nb_sb_ss_w_as-reorder_k0_1_9&=&crid=O64SFPYT0MSI&=&sprefix=micrazyme).
For the past month, I have been taking Micrazym with each meal and snack, as a substitute for the prescription Creon, and I have found it to be very effective. Specifically, I've found that it has eliminated the constant, low-grade nausea I had been experiencing, and it has significantly cut down on the near-constant episodes of diarrhea I had been plagued with every day (and became housebound as a result of) for the eight months prior to getting diagnosed with EPI. I will add that over many years prior to my EPI diagnosis, I had tried countless other digestive and pancreatic enzyme formulas, but I found only very limited relief from my steadily increasing digestive and intestinal problems (i.e., upset stomach, constipation, diarrhea, nausea, terrible gas, sharp pains on the left side of my abdominal area, ileocecal valve problems that caused pain in my right abdominal area, and other issues.)
Therefore, in my efforts to verify the authenticity and efficacy of Micrazym pancreatic enzymes, I did further research on the company making it. As a result, I came across an article describing a legal challenge that was eventually won by AVVA concerning Micrazym. In summary, the article stated that in January 2024, a member state of the EU challenged AVVA's research studies showing that Micrazym behaves in the same way as the authorized medicine, Creon, which also contains porcine pancreas enzymes in gastro-resistant capsules, and for which adequate data on safety and efficacy had already been documented in the literature. The European Medicine Agency (EMA) Committee for Medicinal Products for Human Use (CHMP) was then called in to conduct an indepth review of AVVA's research, and it subsequently ruled that AVVA had provided sufficient evidence to show that the release of Micrazym in the intestines is comparable to that of Creon. Therefore, on May 16, 2024 the European Commission issued an EU-wide, legally binding decision authorizing the legal marketing of Micrazym for those with EPI based on the evaluation of the currently available data. (For exact
references and details, please see: https://www.ema.europa.eu/en/medicines/human/referrals/micrazym-associated-names).
With this reassurance in mind, I decided to try Micrazym. While not a perfect "fix" for all the symptoms EPI has caused me, my experience with this product has been very positive, and I intend to keep using it. I sincerely hope that my experience will be helpful to you and to anyone else struggling with EPI.
It has been a few weeks now since I was prescribed Colestipol 1M/2 tablets twice daily. OMG! What a difference. It's still not perfect, but it has been a game changer. I am still on Creon. I have an appointment with my gastrologist this afternoon to further discuss my medications and symptoms. There just might be hope for me. *Fingers crossed!*
I’ve researched online and some sources say EPI increases the risk of pancreatic cancer. Does anyone have a definitive answer? And if there is a risk, would it make sense to have a scan every 6 months or so?
I also have constipation first, then 3 liquid explosive with low belly cramps. At least I’m not this way everyday. Thank you all.
So …I’m on Creon but I’m hearing you say there is another medication I could take in addition to Creon. Hopeful!
It’s rough, isn’t it? I just had a resurgence of all the painful symptoms and it kept me home for a
Week. I never heard of this
Disorder before. It’s quite challenging.
So I’m
New to this chat group. Does anyone else get flare ups? It makes hard to plan activities.
Blessings from above.