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.

Profile picture for debhammel @debhammel

Great information - thank you!! I've been taking Creon with full meals and the Vital Nutrients supplement with snacks to preserve the very expensive Creon. So far, so good!

Jump to this post

That sounds like a good method in using the two based on a meal or snack. Makes a lot of sense, cost and performance effective.

REPLY
Profile picture for stageivsurvivor @stageivsurvivor

That sounds like a good method in using the two based on a meal or snack. Makes a lot of sense, cost and performance effective.

Jump to this post

I’m severely lacking in Lipase and have been googling OTC enzymes without much luck in finding a Lipase-loaded one. Does anybody know of one?

REPLY
Profile picture for jlmp @jlmp

Diagnosed one week ago and SO many questions. Prescribed very expensive Zenpep. Can I eat as normal while taking these capsules? Need info on dosing, foods I can eat without dosing, etc. Doctor no help with this. He just says take one capsule before a snack and two before a meal.

Jump to this post

Vital pancreatic enzymes OTC(amazon) has 36500 units lipase compared to Zenpep Rx 40000 u and Creon Rx 36000 u. Rx ones are delayed release and considerably more expensive. I took the Rxs initially but have transitioned to the OTC Vital and am doing well with it. A low fat diet helps a lot too!

REPLY
Profile picture for stageivsurvivor @stageivsurvivor

I put in a refill order for my Creon on 12/26. There was a low stock issue with the manufacturer and I just received my order on 1/10.

Here is the difference between the enteric coated Rx brand and the non-enteric coated OTC brands like Vital Nutrients:

The enteric pancrealipase has some is coated so it becomes activated after 30 minutes. This is to provide adequate availability of enzymes throughout the meal.

The non-enteric coated brands become active in the alkaline pH of the intestine and will last 15 minutes. The OTC brand generally contain less lipase than the Rx brands so it is likely more capsules may be required for optimizing. And with taking multiple capsules, stagger the time in dosing. This will ensure sufficient enzymes when eating meals longer than 15 minutes. I’ve talked with both Registered Dietitians and patients using OTC brands and find them equally effective in performance and significantly cheaper than Rx brands.

Jump to this post

Hi all,
I was diagnosed with sever EPI after months of tests and losing weight, stomach aches, and diarrhea. I started on Creon..... which was Ok....but I switched to PURE (Brand) PANCREATIN Enzymes...and (PURE)Ultra Digestive Enzymes. They have worked fabulously ...but if I eat heavy foods and lots of sweet (Chocolate), I definitely pay the price. I brought them to my GI doctor and she was impressed and said I could take these instead of Creon. I have never taken any kind of enzymes before...I thought I had IBS! The enzymes have made a world of difference.

REPLY
Profile picture for jlmp @jlmp

Diagnosed one week ago and SO many questions. Prescribed very expensive Zenpep. Can I eat as normal while taking these capsules? Need info on dosing, foods I can eat without dosing, etc. Doctor no help with this. He just says take one capsule before a snack and two before a meal.

Jump to this post

Wonderful! Thank you so much. I have ordered from Amazon. After I’ve substituted the pricey Zenpep with the Vital enzymes, I will update.

REPLY
Profile picture for khayes23 @khayes23

Why are the meds so expensive for EPI? Zenpap and Creon. What alternatives are there? Pharma company doesnt offer discount if you are on Medicare.
Any holistic approaches available? Thank y ou

Jump to this post

I’m on Medicare and only pay my regular amount of $4.50 per refill. Medicare did not cover Creon for me. Just contacted my doctor because I am having more stomach issues lately, so he will probably up my dosage. I normally only eat 1-2 meals a day, so it shouldn’t affect my prescription. It is frustrating to deal with cost issues. Had a run in with Medicare about another prescription for my diabetes. It took me almost a month to resolve it and get clearence to use it for the rest of the year. I truly wish we had a healthcare system like most European countries, where meds, visits, transportation, etc are all covered. I had a friend from Scotland who got Lymes disease while working here in the states. All her medical bills were covered by the UK’s healthcare system. She never had to pay a penny for anything, even though she was teaching here for a year.

REPLY
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.

Jump to this post

I’m on ZENPEP. Medicare doesn’t cover Creon. Worked great for the first 3-4 months, now I’m back where I started. Hard to get hold of my doc and he seems indifferent to helping me. From what I have seen, most Gastroenterologists seem to lack any empathy for their patients. I had a great one years ago, he was the top world wide doc in the field. He treated my sister for severe Crohns issues. He called her his miracle child. I also saw him for GI issues. He had a great bedside manner, was patient, informative, and gentle. Unfortunately, he’s retired now. I wish I could find someone like him. The guy my sister goes to now is different than my doc, but she says the same thing I do, he’s not very good. I have seen so many complaints about doctors not being empathetic at all. I don’t know if it’s because they have too many patients with issues, or if they just don’t give a damn. I wish you the b3st of luck.

REPLY
Profile picture for Garygirl @taftst1

Zenpep? Had that years ago. It’s to bulk up stools. You must have gastro problems. Had Creon too I think, years ago. Zenpep helps you digest and get nutrients out of food.

Jump to this post

ZENPEP is not to bulk up stools, it adds the missing enzymes back into your system so your body can break the food down so it can be absorbed. The by-product is that your stools are bulked up because the food has been broken down and is being used properly.

REPLY
Profile picture for geegeebabe @geegeebabe

I’m on Medicare and only pay my regular amount of $4.50 per refill. Medicare did not cover Creon for me. Just contacted my doctor because I am having more stomach issues lately, so he will probably up my dosage. I normally only eat 1-2 meals a day, so it shouldn’t affect my prescription. It is frustrating to deal with cost issues. Had a run in with Medicare about another prescription for my diabetes. It took me almost a month to resolve it and get clearence to use it for the rest of the year. I truly wish we had a healthcare system like most European countries, where meds, visits, transportation, etc are all covered. I had a friend from Scotland who got Lymes disease while working here in the states. All her medical bills were covered by the UK’s healthcare system. She never had to pay a penny for anything, even though she was teaching here for a year.

Jump to this post

Ask your doctor about assistance in applying for free Creon from the manufacturer, AbbVie. This is availably only through your doctor's office. You can also search for Creon discounts on line, but those appear to be available only to people without any insurance, including Medicare. It sounds like your doctor needed to do a pre-authorization for the Rx to be approved - you should also ask about this. Another option if you can't get this medication is an over-the-counter supplement from Vital Nutrients called Pancreatic Enzymes. This has lipase, amylase and protease levels very close to the 36000 level of Creon.

REPLY
Profile picture for geegeebabe @geegeebabe

I’m on ZENPEP. Medicare doesn’t cover Creon. Worked great for the first 3-4 months, now I’m back where I started. Hard to get hold of my doc and he seems indifferent to helping me. From what I have seen, most Gastroenterologists seem to lack any empathy for their patients. I had a great one years ago, he was the top world wide doc in the field. He treated my sister for severe Crohns issues. He called her his miracle child. I also saw him for GI issues. He had a great bedside manner, was patient, informative, and gentle. Unfortunately, he’s retired now. I wish I could find someone like him. The guy my sister goes to now is different than my doc, but she says the same thing I do, he’s not very good. I have seen so many complaints about doctors not being empathetic at all. I don’t know if it’s because they have too many patients with issues, or if they just don’t give a damn. I wish you the b3st of luck.

Jump to this post

I was diagnosed 6 months ago and have the same kind of gastroenterologist. I am now driving three hours to a new doctor and clinic. I’m low in all three major enzymes, with lipase being extremely low. Zenpep works great but it is terribly expensive. I found a pancreatic enzyme medication that works exactly the same for me. It is Vital Nutrients Pancreatic Enzymes. It costs $38.

REPLY
Please sign in or register to post a reply.