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.

scottzee | @scottzee | Aug 27, 2024

In reply to @mari "I'd like to try them? Marian" + (show)

Hey there, how long have you been on this medication? I just want to confirm that you’re going to need this?

rka19 | @rka19 | Aug 28, 2024

In reply to @jkarmazin "I looked at those and the difference is that amounts of the three enzymes are expressed..." + (show)

I have zero enzymes 36000 units is required. Going to ask my doctor to write me a script to order from Canada. Have mri tomorrow. I have numerous polyps in stomach covering pancreas and duodenum. Stop was ok as celiac and gluten. Much success

jlmp | @jlmp | Aug 28, 2024

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

Does anyone with EPI have the enzyme pills suddenly stop working? My texts showed zero Lipase and for a while two pills before a meal and sometimes one during a meal prevented diarrhea. Now they’ve stopped working. Do any of you take more pills with each meal and if so up to how many?

mari | @mari | Aug 29, 2024

In reply to @scottzee "Hey there, how long have you been on this medication? I just want to confirm that..." + (show)

Oh yes, I have Pancreatic Insufficiency. I've been diagnosed with Many tests.
and Scans.

I need Vital 3 times a day Or Else!
I was given physician samples of Zenpec. It work great. but, too expencive.

mari | @mari | Aug 30, 2024

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

I would look forward to receiving the meds.

slkanowitz | @slkanowitz | Aug 30, 2024

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

I just checked my bottle of Vital nutrients pancreatic enzymes and the lipase dose is 35,500 USP units. It’s 180 capsules and 2 a day, 1 with lunch and dinner, seems adequate for me but I know others may need more. My elastase test result was 58 (>200 normal) if that helps anyone. I get mine from Amazon but I think drugstores and grocery stores have this too. It’s currently 74.90 for 180. There are several products so be sure to look at the back of label to check dosage. There’s also a 5%discount if you subscribe and save.

regalrottweilers | @regalrottweilers | Aug 30, 2024

In reply to @slkanowitz "I just checked my bottle of Vital nutrients pancreatic enzymes and the lipase dose is 35,500..." + (show)

I am very fortunate as I now get my digestive enzymes prescribed from my doctor and insurance covers them.
I get triple what I need. Anyone taking Creon prescribed? Or in need? Any issues for those of you who take it?

rjcoach1951 | @rjcoach1951 | Sep 4, 2024

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

Diagnosed with EPI. Taking Creon 36000. 3 every meal for about 2 months. Have not seen any improvement. I see a Gastro doctor. Any advice on a second opinion to see a Pancreatic specialist at the Mayo in Rochester Mn. I live in the South. A long way away.

rdschicago | @rdschicago | Sep 5, 2024

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 been taking Creon for a few months, as a result of Crohn’s. My elastase test showed a level of 129. It has helped tremendously. Prior to taking, I had terrible odorous gas most of the day and oily diarrhea. I also lost 25 pounds since my third small bowel resection in April 2023. My symptoms have abated substantially. Creon is a miracle drug for me! I’m still having trouble gaining weight back, but at least I’m feeling good most days.

stageivsurvivor | @stageivsurvivor | Sep 5, 2024

In reply to @penelope52 "Thanks for the reply. I sent this to my gastro for input. I don't know if..." + (show)

While all the OTC and Rx pancrealipase are sourced from porcine pancreas, the Rx brands use enteric coatings to control the time release of the microspheres of the amylase, lipase and protease. This is how the capsule contents provides coverage over 45 minutes. Non-enteric coated enzyme brands get activated immediately upon reaching the alkaline pH of the intestine and lose their activity after 15 minutes.

As was already pointed out in another post of this thread, manufactures use different units for reporting the enzyme concentration of lipase. The Rx brands tend to have a higher lipase concentration than the OTC counterpart.

Another difference is in order to have FDA approval, the Rx brands must meet or exceed rigid quality control standards including adhering to a tighter tolerance in variability of enzyme activity published on the label. Variation from what is published must be within +/- 10%. This adds manufacturing costs for adhering to FDA manufacturing guidelines.

The variability is a much wider range in OTC brands. This would be important with infants and adults following a limited, consistent diet where dosing is more critical.