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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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I have EPI and had diarrhea, foul smelling, and oily stools that floated from the malabsorption of dietary fat. The stool tests will diagnose it.
There are 2 RX meds for EPI- Zenpep and Creon. Creon is cheaper but still expensive. There’s also an OTC enzyme on Amazon (Vital pancreatic enzyme) that has almost the same amount of lipase for digestion of fats, the most important ingredient. I started out using the rxs but have been able to transition to the Vital, one cap with each meal. A low fat diet helps a lot.
I think the recommended dosage for the Rxs is higher than needed for most people.
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5 ReactionsPlease visit the National Pancreatic Foundation online for a registry and very helpful information on EPI. Many of your questions can be answered there.
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5 ReactionsI started to get really bad diarrhea that was fairly frequent throughout the day and was not normal. I would have about 10 minutes max before I could not control myself.. It took 3 poop tests and about 2-3 months before my diagnosis. I also have diabetes and I have read that some of us can also get EPI . After taking CREON, my symptoms of uncontrollable diarrhea subsided, but my poops are soft in nature , but I am regular in when I go.
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1 ReactionThanks to all of you for offering info on EPI. I am beginning to get an understanding of what I am supposed to be eating. I ordered the Vital pancreatic enzymes from Amazon today, hoping that I can occasionally substitute for some of the CREON and make it last longer.
Question: Can I have a glass of wine occasionally? I had an MRI and no problem with pancreas. My EPI test was 115. I am worried that alcohol would put me in danger of pancreatitis. Any info on that?
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2 ReactionsDo any of you take vitamin and/or mineral supplements? How do you know if your body is retaining what it needs? I have an annual check-up with blood tests, etc. and I’m wondering if once a year is enough.
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1 ReactionOur doctors literally do not know what causes EPI, other than people with cystic fibrosis are prone to developing it.
I was not aware of this OTC supplement - the contents are very close to Creon. I've ordered some to use for snacks instead of taking Creon to extend the Rx a bit further. The Creon is super expensive!
The symptoms also came on for me pretty quickly, one week I was eating a cheeseburger and ice cream and the next week it made me sick. I found it helpful to keep a food diary because everyone is different. For me, I am now lactose intolerant. My doctor also had no explanation for why EPI happened, his guess was old age, I was 65(is that old?) when diagnosed. Try switching to some plant based diet options, think fruit smoothie with a scoop of protein powder and oat milk and you only need 1 Creon or ZenPep. I live in Florida so I use frozen fruit and chocolate protein powder and pretend it’s a milkshake.
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3 ReactionsHow can an MRI show "no problem" with pancreas?
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