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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.

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penelope52 | @penelope52 | Sep 5, 2024
In reply to @stageivsurvivor "While all the OTC and Rx pancrealipase are sourced from porcine pancreas, the Rx brands use..." + (show)
Profile picture for stageivsurvivor @stageivsurvivor

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.

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Thanks for this, very helpful.

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slkanowitz | @slkanowitz | 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)
Profile picture for slkanowitz @slkanowitz

The prescription enzyme I take is 368.00 a month copay. Without insurance it is over 2000.00 a month! I’m looking for an affordable over the counter pancreatic enzyme with comparable lipase dosage of 40,000 units. I would appreciate any suggestions, as the diarrhea caused by this condition is intolerable.

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RJ Coach, Do you know what your elastase level was? The lower it is, it would make sense the higher the dose of Creon you need. There’s also a possibility that you might have another digestive problem like Bile Acid or a coexisting food intolerance like gluten or lactose contributing to the problem. I would ask your GI dr to consider and test for any other issues that could cause your symptoms if that hasn’t already been done. Good luck and let us know what you find out please. We are all learning from one another here. Since you live in the south have you considered Mayo in FL or AZ?

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ganway | @ganway | Sep 6, 2024
In reply to @rjcoach1951 "Diagnosed with EPI. Taking Creon 36000. 3 every meal for about 2 months. Have not seen..." + (show)
Profile picture for rjcoach1951 @rjcoach1951

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.

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I started out taking 11 creon a day in 2017 after diagnosis of EPI. I learned to stay away from lettuce and dairy foods. Carbs do well. I still have problems from time to time but I hardly ever take creon now. I hope you can learn to cope with this disease. It may get better.

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stageivsurvivor | @stageivsurvivor | Sep 6, 2024
In reply to @slkanowitz "RJ Coach, Do you know what your elastase level was? The lower it is, it would..." + (show)
Profile picture for slkanowitz @slkanowitz

RJ Coach, Do you know what your elastase level was? The lower it is, it would make sense the higher the dose of Creon you need. There’s also a possibility that you might have another digestive problem like Bile Acid or a coexisting food intolerance like gluten or lactose contributing to the problem. I would ask your GI dr to consider and test for any other issues that could cause your symptoms if that hasn’t already been done. Good luck and let us know what you find out please. We are all learning from one another here. Since you live in the south have you considered Mayo in FL or AZ?

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The amount of Creon needed is not so much the current elastase level of an individual but more of the ingredients and the quantities of a meal. This is why the recommendation of Registered Dietitians and the manufacturers is to calculate the amount of carbohydrates, fats and protein in a given meal to optimize dosage. This is made easier using the on-line dosage calculator at https://digestthis.ca

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slkanowitz | @slkanowitz | Sep 6, 2024
In reply to @slkanowitz "The prescription enzyme I take is 368.00 a month copay. Without insurance it is over 2000.00..." + (show)
Profile picture for slkanowitz @slkanowitz

The prescription enzyme I take is 368.00 a month copay. Without insurance it is over 2000.00 a month! I’m looking for an affordable over the counter pancreatic enzyme with comparable lipase dosage of 40,000 units. I would appreciate any suggestions, as the diarrhea caused by this condition is intolerable.

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Thanks for that link. I try to keep my fat intake low and somewhat consistent but I will check this out!

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penelope52 | @penelope52 | Sep 7, 2024
In reply to @slkanowitz "The prescription enzyme I take is 368.00 a month copay. Without insurance it is over 2000.00..." + (show)
Profile picture for slkanowitz @slkanowitz

The prescription enzyme I take is 368.00 a month copay. Without insurance it is over 2000.00 a month! I’m looking for an affordable over the counter pancreatic enzyme with comparable lipase dosage of 40,000 units. I would appreciate any suggestions, as the diarrhea caused by this condition is intolerable.

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I love this site. Nothing like the actual lived experiencce of patients to provide helpful information. I was not aware Creon did not treat all foods equally, as far as digestion. Thanks for this info. I see my dietitian in a few weeks and will discuss this with her. Going to the online calculator, thanks for posting that.

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mari | @mari | Sep 7, 2024
In reply to @regalrottweilers "I am very fortunate as I now get my digestive enzymes prescribed from my doctor and..." + (show)
Profile picture for regalrottweilers @regalrottweilers

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?

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I could use them
$1100 For me!
Do you have leftovers?

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rjcoach1951 | @rjcoach1951 | Sep 9, 2024
In reply to @ganway "I started out taking 11 creon a day in 2017 after diagnosis of EPI. I learned..." + (show)
Profile picture for ganway @ganway

I started out taking 11 creon a day in 2017 after diagnosis of EPI. I learned to stay away from lettuce and dairy foods. Carbs do well. I still have problems from time to time but I hardly ever take creon now. I hope you can learn to cope with this disease. It may get better.

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Thank you for your suggestions. Trying to figure out all of these foods. Creon has not helped so far. Doesent seem to matter what I eat. Lost about 25 pounds but it has leveled off.

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Profile picture for rjcoach1951
rjcoach1951 | @rjcoach1951 | Sep 9, 2024
In reply to @slkanowitz "The prescription enzyme I take is 368.00 a month copay. Without insurance it is over 2000.00..." + (show)
Profile picture for slkanowitz @slkanowitz

The prescription enzyme I take is 368.00 a month copay. Without insurance it is over 2000.00 a month! I’m looking for an affordable over the counter pancreatic enzyme with comparable lipase dosage of 40,000 units. I would appreciate any suggestions, as the diarrhea caused by this condition is intolerable.

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I tried to get in Mayo Jacksonville. I have been there for Prostate issues. They said they could not accept any new patients in Gastro dept. I contacted Mayo in Rochester because they have pancreatic department. I am going in November. It is going to be an expensive trip from where I am. I hope they can help me. Got to try something.

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mtkachow | @mtkachow | Sep 16, 2024
In reply to @mizzousc88 "I have gathered I formation from NP at GI office as well as dietitian. Plus I..." + (show)
Profile picture for mizzousc88 @mizzousc88

I have gathered I formation from NP at GI office as well as dietitian. Plus I follow a EPI dietitian on FB who is very knowledgeable in this area. I also follow a EPI support group on FB. Many folks in this group have had EPI for years and share their experiences. Read various articles from reputable sources. The more you educate yourself the better you are at advocating and helping manage the condition.

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Thank you for the information regarding information on FB!

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