Creon 20 and Pancreatic Enzyme Deficiency

Pancreatitis
#1

I was diagnosed with Hepatitis C and Pancreatic Enzyme Deficiency within 6 months of one another in 1993. I have been on Creon 20 (900 capsules per month) for 15 years. I can’t afford my medication any longer and feel alone in finding resources. Great to find a support group. I hope I can figure this out.

The doctor who originally diagnosed me after my pancreas failed and I was close to death, told me it was pancreatic enzyme deficiency. That’s the diagnosis I’ve had now for 15 years. I am anxious to find others out there who may have this condition. I don’t know anyone else with it. Is there a cure? Is there another treatment? What does the future look like with it?

PancreasMissBehaving in Dallas

#2

Hi DallasGirl,

I just wanted to share with you a couple of things. Do you know who is the maker of your medications? and if so sometimes you can call them let them know your about your financial problems and they will send them to you free of charge. Also there is Montel’s website out there for prescription help or free of charge. One last thing get all the samples you can from your doctor and let him know what is going on as well, most of them will give you samples until you can get your pres. that you need. But really take advantage of the FREE resources out there. I know there are more, but I just can’t think of them right now.

Good Luck to you, and I am sending you big hugs, and Lots of Love,
Mrs Barb-AKA Barb

#3

Thanks for all who responded today. Spring, I’ll check out the pangestyme-UL20. I don’t know if that’s Lipram or not but Lipram made me sick. I was told by my doctor and pharmacist that the formula are very different and that’s why I got so ill.

I see my liver/pancreas doc on the 23rd of this month so maybe I can see about free samples. I know last year they just didn’t have that kind of supply available. 900 per month. Does anybody know if that’s a pretty normal amount to be taking. It always seems to surprise a new pharmacist??? Well you guys have a great day!

#4

Thanks for the response. Yes, I’ve tried the Patient Advocacy Foundation and the Co-Pay Relief Foundation. I’ve written to Montel (no response yet) as well as Oprah (on I’m their mailing list now for other stuff but no answer). The problem is that I have Medicare Part D so my Creon cost hit the maximum 45 days into the plan so now I’m paying out of pocket. I just don’t have $5,000 to run up to the drug store with. I’m scrambling to find the money now. I was really surprised that the maker of the drug told me that if I wasn’t on Medicare, they’d consider my application for assistance. I’ve talked to many foundations over the past month, and all of them are surprised at this. I sure have found alot of help for other diseases though so I’ll have to pass that on after I get my medication issue resolved. It is what it is.

#5

Hi,
I am River~, nice to meet you!! I have a site that may help you. It will be a good resource. I have several other sites if this does not meet your needs. Just get in touch with me if you have other questions about this site…

http://www.needymeds.com/

Are you doing any thing about your Hep C ? With both of these disorders you must be sick and tired of being sick and tired??? Hope this helps and you’ll find wonderful support here at careplace.
Hugs

#6

Hi Dallas girl,

I used to take creon but for cost reasons I changed to pangestyme-UL20. Works just as good. My doctor did not have any problems changing my prescription. There are many enzymes on the market and prices vary from pharmacy to pharmacy. My doctor told me to ask my pharmacist what was equivalent and cheaper and she would authorize the prescription.

Hope this helps,

Spring

#7

Hi DallasGirl,

I take 3 of the pangestyme-UL20 with meals and 2 with snacks. I get 500 each month. It is always more than I need.

Spring

#8

DallasGirl

900/month is quite a bit. That equates to 30 capsules/day which is well above the norm. I was taking 15/day and my pancreatic specialist felt that was excessive (my primary GI originally prescribed that much). The pancreatic specialist stated that more is not better and that there is a maximum amount of Lipase (one of the 3 enzymes in Creon) that one can take in a day before more is not more effective. Doc K cut me back to 9 capsules/day and I get the same relief as 15. Look to your town for some assistance with medication.

Good luck and keep us posted.

Hugs and pain free days to you,

Teresa

#9

Aloha to you Dallas girl , I take alot of “enzymes” myself just about the same amount you do,I’ve been having to take that many for just about 3 years… im to the point that when im hungry and time to start gulping those things down I start to gag,I dont know what im gonna do if this gag response I’ve been feeling lately gets real bad and im unable to takem by mouth,does anyone know an alternative? about your outa pocket fees for your enzymes ,doesn’t your state cover the fees?I live on Kauai Hi. and all my meds ,every thing including going to doctor appts. on Oahu are covered …they fly me to Honolulu,pay for my cab,put me in hotels (when needed) all my needs are paid for through our state ,im thinkin millions and,the best part is that no paper work is ever needed my signiture is rarely needed if I wanted ,I could even have a nurse live in --all paid !! am I bonkers ? I thought all states had a program like this,now I’m curiose,I have to say though we dont have the greatest physians in the world , but Hi. will pay for me to go to mainland if need be…tell me if im crazy lucky ?and if so …move here !!! I could always use the companyanyhoo Dallas Girl I hope things work out for you soon cuz you paying a sweet bundle monthly for your meds…your new friend…ALOHA GIRL and I’ll certainly be praying for you always…Lori

#10

Hello just wanted to respond to this post, I take 8-10 enzymes per day 2 with every meal/snacks I have not heard of anyone taking that much? have you gotten another opinion? I would sure consider doing that. The name of my enzymes is “Pangestyme/Pancrelipase” the company that makes these are “ETHEX” they run around $45.00 a month because my ins. doesn’t pay for mine either??? Each capsule contains: Lipase-4,500 Amylase-20,000 Protease-25,000…I hope this helps, maybe you can check into this medication?

Also I want to let everyone on CarePlace know that my Blood Platelets are down again to 22,000, I will go back on Monday for another Lab if they are the same or lower then I will go in for another transfusion, but I will try and update you all by the end of next week…I am pretty tired and wore out from the low Blood counts, and need to pretty much do nothing so I don’t get hurt or cut, so here I sit…

Anyway God Bless, and prayers to all of you, for a pain free night/day…

With All My Love,
Mrs Barb/aka-Barb :slight_smile:

#11

Dear Lori,

I was intrigued by your email as I intend to retire in Hawaii in the next 10 years. I have a cousin on Maui. He served as a marine so the VA takes care of him and his wife. I never knew about this health care from the state. Please tell me more or can you tell me where I can find more information.

Health care is the one item stopping me from retiring early. I was planning to retire on Oahu only because I know from my cousin that they must go to Oahu for most of their health care. So with all of my problems I just thought is cheaper and easier to live on Oahu. I have been to all of the islands and Kauai is truly beautiful.

How long have you lived in Kauai?
Spring