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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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Recommendations? I live in Michigan, but might consider traveling to outlying states.
I take 2-4, 24000 USP of Lipase units per meal, depending on the size of the meal or how long I am eating it.... That comes out to 48000-96000, per meal.
EPI can be idopathic, meaning there is no known cause for it. Many of us are in that situation. As for the life obstruction, I understand, most of us are in the same situation. Are you on any type of PERT, like ZENPEP or Creon? You need to stay in contact with your doctor and let him/her know you are still having problems. It often takes a while to get the dosage right, and even then you can still have issues despite taking enzymes. As you get to a better dosages, you will find that you have more good days than bad. However, you have to remember that this is not a medication to get rid of your symptoms, rather a replacement therapy for something your body no longer makes. Just as in the past, prior to having EPI, you can sometimes feel sick after a meal. It depends on how much fat, protein, sugar, etc. you put in your body. Each person is different, and their body will react differently to foods, than another person with EPI. I find that ginger tea and probiotics help to keep my gut feeling better. There is no miracle cure for this, it will take time and patience to figure out how to best deal with this.
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2 ReactionsMayo clinic in Rochester, Cleveland Clinic? I would check your local university hospital clinic first. Most require a referral from your pcp or specialist.
Are there any Pancreatc specialist closer to the South. Rochester is a long trip from Georgia.
Does anyone with EPI also have a Tortuous and Redundant Colon and IBS?
Check with Emory in Atlanta; they are a teaching hospital and may be able to direct you. Mayo has a location in Jacksonville.
Jkarmazin, I have EPI and Redundant colon, Probably IBS also. I don’t know if the three are related. It’s quite the balancing act to juggle the diarrhea from EPI constipation from Redundant colon, And who knows where the IBS fits in? Not a fun trio!
Do you find it difficult to know what is causing your EPI issues because everything takes longer to get thru the colon?
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1 ReactionWhen my EPI symptoms break thru it’s usually because I forgot to take my enzyme soon enough or pigged out on fried foods! 😖