EPI meds expense

Posted by grannydee @grannydee, Dec 12, 2021

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.

Interested in more discussions like this? Go to the Digestive Health Support Group.

coooldad | @coooldad | Feb 8 7:16pm

In reply to @jlmp "I’ve researched online and some sources say EPI increases the risk of pancreatic cancer. Does anyone..." + (show)

Hi there! I was diagnosed with EPI a year ago by my Primary and have since then been seeing a GI at Cleveland Clinic who specializes in the pancreas. During my first appointment, he said that one of the most asked questions with EPI patients is whether or not EPI makes one more susceptible to pancreatic cancer. He said the answer is absolutely not! Hope this helps!

delilady | @delilady | Apr 14 7:52pm

In reply to @slkanowitz "The prescription enzyme I take is 368.00 a month copay. Without insurance it is over 2000.00..." + (show)

Pancreas not producing enzymes and on Creon. How serious is this?

Pancreas not producing enzymes. On Creon. Constant stomach pain, lower back pain, nauseous, fatigued, bo control over bowels. They are medium color (I take a lot of Pepto, so mostly are black and oily), float or are like oatmeal. Doc just doubled my Creon and I am scheduled for MRI w/w out contrast in 4 days. When I know a problem with pancreas, the first thing I worry about is pancreatic cancer. Anyone else having these symptoms and have you been diagnosed?

Colleen Young, Connect Director | @colleenyoung | Apr 16 12:53pm

In reply to @delilady "Pancreas not producing enzymes and on Creon. How serious is this? Pancreas not producing enzymes. On..." + (show)

Welcome, @delilady. I moved your question to this existing discussion in the Digestive Health support group where other members are talking about pancreatic insufficiency, meaning the pancreas doesn't produce enough enzymes sometimes referred to as Exocrine Pancreatic Insufficiency (EPI).

- Does anyone have EPI (Exocrine Pancreatic Insufficiency)? https://connect.mayoclinic.org/discussion/does-anyone-have-epi-exocrine-pancreatic-insufficiency/

I did this so you can read previous posts and connect with other members like @mutter3 @msmelnik @slkanowitz @myrrh739 @jlmp @coooldad @darb and many others.

Delilady, it is a common reflex to leap to the worse case scenario and fear that cancer may be the cause. However pancreatic insufficiency can be caused by many different things like:
Pancreatitis
Diabetes
Surgery related to the GI tract
Genetic conditions
Celiac disease
Pancreatic cancer
Inflammatory bowel diseases
Zollinger-Ellison syndrome

It sounds like you and your doctor are investigating the cause by ordering an MRI.

yanina | @yanina | Apr 16 9:39pm

In reply to @delilady "Pancreas not producing enzymes and on Creon. How serious is this? Pancreas not producing enzymes. On..." + (show)

Get on the pancreas surveillance program where you will be screened closely more often and keep an eye on your glucose. (It becomes finicky closer to the pre-cancerous stage.)

yanina | @yanina | Apr 16 9:50pm

In reply to @slkanowitz "The prescription enzyme I take is 368.00 a month copay. Without insurance it is over 2000.00..." + (show)

I've noticed most of you folks on Creon. I was just using publicly available brands like Mercola, Metagenics, Pure.
So I had to take up to 54k of lipase units and it wasn't still enough. Nobody told me that uncoated enzymes are not gonna work in mine intestine. Then, I discovered Pertzye. So my life is now divided into before and after i tried these miracle pills. I was able to decrease the lipase dosage significantly and the crucial pain ( + fear after meal intake from the sense of the pain inevitability) also drop down severely. I am pro less fillers in the pill and Pertzye vs Creon is certainty wins. Just sharing my experience ..not an ad.

delilady | @delilady | Apr 16 10:46pm

In reply to @yanina "Get on the pancreas surveillance program where you will be screened closely more often and keep..." + (show)

I am type II diabetic plus multiple other health issues. I am having a MRI this Saturday to see if anything else is going on with my pancreas. My doc just doubled my Creon dosage. I am now taking 2 (36000 Unit) before meals and another 2 in middle of meal. Then 2 more if I snack on anything. I don’t understand what you mean by your comment in parentheses.

agikam | @agikam | Apr 17 9:32am

In reply to @jlmp "I enjoy snacking on nuts throughout the day. Have any of you found any nuts that..." + (show)

Maybe hazelnuts

yanina | @yanina | Apr 18 12:03am

In reply to @delilady "I am type II diabetic plus multiple other health issues. I am having a MRI this..." + (show)

I was just diagnosed with Type 2 as well. I've done MRCP and planning on doing EUS which is believed to be superior to spiral CT and MRI in the detection of small tumors
https://www.sciencedirect.com/science/article/pii/S1365182X15309746
https://pmc.ncbi.nlm.nih.gov/articles/PMC3397617/
https://pmc.ncbi.nlm.nih.gov/articles/PMC6284179/

delilady | @delilady | Apr 18 2:50am

In reply to @yanina "I was just diagnosed with Type 2 as well. I've done MRCP and planning on doing..." + (show)

What did you mean in your first comment “precancerous stage”. I have not been told I have cancer but all these tests concern me.
Do you have pancreatic cancer?

yanina | @yanina | Apr 18 9:40pm

In reply to @slkanowitz "The prescription enzyme I take is 368.00 a month copay. Without insurance it is over 2000.00..." + (show)

@delilady I was referring to the statistics on the topic.
It's like the domino principle, first you've got chronic pancreatitis, then diabetes and most are ending up with cancer. But it can happen over the 5-25-40 year time span or faster. Here are some sources:
https://www.cancer.gov/news-events/cancer-currents-blog/2021/pancreatic-cancer-diabetes-early-detection
https://www.nature.com/articles/6602619
https://www.sciencedirect.com/science/article/pii/S1743919115003428
https://www.thelancet.com/journals/lanwpc/article/PIIS2666-6065(22)00211-5/fulltext
https://www.e-dmj.org/journal/view.php?number=2929
I don't know yet same as you I guess.

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