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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The Vital nutrient pancreatic enzymes do work.! Both my sister and I have EPI and take these successfully. Just be sure to check the back label for lipase dose of around 36500 units. Amazon has these. I take 2-3 a day with meals but you can take more if needed. Staying away from fried and fatty foods helps. It took me a long time to get this figured out. You will feel better! Hang in there. 😀
Along with an increase in Creon, I have been put on Colestipol 1M/ 2 tablets twice daily. THIS seems to be helping immensely. It's been suggested that I have EPI with BAM. I have had 12 days straight with no diarrhea. However it is still too early to determine if this is the magic combination. Fingers crossed. I am still having significant discomfort in the right upper quadrant (under rib cage) that radiates into back. Will keep everyone in this forum posted.
Yes we will. Canada only has 25000units. Still waiting on ABBVIE to make a decision.
Much success
Becky
This is an excellent post. I was recently diagnosed with EPI and meeting with a nutritionist who understands this condition was essential. Most nutritionists deal with diabetes and weight problems. I also have Celiac Disease - CD has a much higher rate of EPI than the general population.
Most of the information I have gained about this condition has been from reading medical journals (my background is in traumatic brain injury and vestibular dysfunction - so I am fortunate and have access to medical journals). One thing I found out - which none of my doctors told me is that the medication for Hasimoto's thyroid condition interferes with L-Thyroxine. I changed the timing of my L-thyroxine to late at night - 4 hours after eating.
It is interesting to see how many people on this thread note that their physicians were not much help at all. I found the same thing - and it has been extremely frustrating.
For many people, reading medical articles - if you are not accustomed to these types of articles - can be intimidating. But it really is essential to understanding EPI - because we cannot rely on the medical community for our own health needs.
The biggest mistake people make when diagnosed with EPI is going with a FODMAP type diet. Low fiber is essential - and avoid dairy.
Work with a nutritionist. Also, know that all the medications for this disorder likely need adjusting for each patient. Creon did not work well for me - I am still working my dosages and when to take my medication.
Make sure too that you get regular check ups for pancreatic cancer - as anyone with EPI is at very high risk.
Is anyone else struggling with friends and family regarding changes to your diet? Many of my friends are 'Foodies' and it is difficult to get together because they are always focused on food and drink. This for me has been one of the most difficult issues with my EPI diagnosis.
Ihave been diagnosed with both colitis and pancreatic insufficiency. Cannot figure out what I should snd should not eat. Any help would be appreciated
I have EPI and I was prescribed Creon an enzyme to digest the food and it’s good, I’m feeling much better, my digestive system is working much faster than before.
Same here. Even my husband tells me to have some wine because he wants to drink with me. Friends arent much different either. They insist occassional cheats wont hurt.
Just a FYI on this subject. I now have a 4th member of family with EPI (myself, sister, 2 nieces), which anecdotally supports the notion of a hereditary tendency. 2 of us have type 2 diabetes, also linked to EPI. It does make sense that correcting ampullary stenosis (stricture) might correct the EPI.