CREON..Pancreatic enzyme supplement cost

I have Medicare with a part G plan and drug coverage with AARP. I am in what is called the donut hole now and my last script for 200 24000 Creon was $380. If I get through the donut hole that will go down a lot and next year after the deductible before the donut hole it will be less also. I also checked with a Canadian Pharmacy and that would have been a little less once you add in shipping. But if I did that I would not move closer to getting through the donut hole. I figure I will make up the extra and then some if I just stay with my Part D AARP plan. It is the lowest cost if I go to my local Walgreens. Mail order would be more and other pharmacies would be more expensive. There in a Medicare site where I can compare drug plans. I just list the meds I take and it tells me what plan would be less expensive. This year it was the AARP plan. I can change my part d plan every year if I want and there are no penalties.

Hi Colleen. Thank you for reaching out. I had whipple surgery in October 2023 after a routine endoscopy discovered a 50mm sessile polyp at the ampulla. A biopsy showed the tumor was benign, but I was told that this type of tumor had the potential of becoming cancerous. Due to its size and location, whipple surgery was the only way to remove it. I am fortunate to live in close proximity to an excellent cancer hospital and I had faith in my surgeon and her staff. The surgery is a difficult one with many possible complications and side effects. I didn't want to live in fear, however, so I decided to have the tumor removed. It's been eight months now and I'm still trying to get used to the "new normal". I still get fatigued easily and I'm working on replacing the weight I lost. It also affects your mental health. The term "chronic illness burnout" comes to mind. I had no luck locating any whipple support groups locally, so I decided to sign on to Mayo Clinic Connect. I am helped and humbled by all of the posts. I was very fortunate that this tumor was discovered before it got worse. I will prayer for everyone who has gone through this surgery. And chemo and radiation? I can't even imagine the amount of strength that takes. Thank you for allowing me to be part of your group.

The cost for Creon is the highest single medication bill we pay since my husband's total pancreatectomy. This year with the changes by March we had paid out a very large amount of money and then pop, now we are through some kind of a door and there is no cost to any of my husband's medications when using Medicare related Part D/ Wellcare Drug insurance. We just have found that being prepared to put out that amount at the beginning of each year will be the ongoing challenge and plan. I was fascinated with the free Creon from the Abbvie company by "whipple 2232" comment. You are fortunate. We even have had periods that we have had to search for a pharmacy source for the Creon and switching pharmacies for one that can access it. (We live in a large metropolitan area. ) We were doing well at our local Fred Meyer Pharmacy until a year ago and then poof, it was no where to be found. We finally did a mail order pharmacy, but found that it wasn't part of our Part D program at the beginning of the new year. Currently we are getting it through Costco, but we must give them heads up to have it on hand. Clearly far more expensive and difficult to obtain than insulin. The bottom line is that without an adequate dose of Creon absorption will not happen well. He was on a lower dose for sometime after surgery with multiple stools daily, an increase to 36,000 pill size doses changed that to more normal stool pattern, thus increasing absorption for him. What was fascinating to me was to learn that without taking the prescribed proton pump inhibitor, an alkalinizing medication) 30 minutes before the first meal of the day his stomach would stay acidic. When the stomach is acidic then the Creon breaks down there reducing its usefulness rather than below that in the intestine where the absorption for many nutrients takes place. We found also that iron and calcium want acidic stomach fluid to begin their digestion at that point, so due to that he has deficits in iron and calcium levels. (He also has no pylorus, lacks 1/3rd of his stomach, has no duodenum, spleen or gallbladder. Thus missing a lot of enzyme.) There are some absorptive qualities of iron & calcium ongoing in the small intestine that supports absorption but he has had to have IV ferritin twice during the last 5 years post pancreatectomy although we document the iron intake and it is over twice that of the minimum daily needed and he isn't on chemo now. This is my understanding, check with your prescriber on that information as everyone may have a bit different surgery and thus medication needs. Only follow your prescriber's advice. His exhaustion decreased with the Ferritin infusion from his oncologist. Just this week he received an infusion of Zometa for bone hardening to decrease the osteoporosis. He is also 80, so there are likely lifetime issues that precipitates his needs. Our Endocrinologist for diabetes is also a bone specialist. I have found that asking questions for guidance ongoing from our medical team is the most informative and healthful way to precede, with the problems. No one answer fits all.

There is an upcoming Pancreatic Cancer Support group meeting listed under the events section of MayoClinic Connect website. The next meeting is Tue, Jun 25, 2024
12:00pm to 1:30pm MT. The link will provide information to register.

The Pancretic Cancer Action Network maintains a list of all support groups that meet in person or via Zoom. PanCan.org has a page on their website for support groups. You can also call the organization at 877.272.6226., M-F, 7:00am-5:00pm and a case manager will provide information about active support group meetings, when they meet and how to register.

The SeenaMagowitzFoundation.org has active support groups for newly diagnosed, long-term survivors and caregivers. They meet on Mondays and information on how to register to obtain the Zoom link is on their web page. They meet on Mondays at 7:30 pm ET/4:30pm PT.

CraigsCause.ca meets on Mondays as well at 7:00pm ET/4:00pm PT. This group is based in Canada but consists of Canadian, US and some other countries.

The cost for Creon is the highest single medication bill we pay since my husband's total pancreatectomy. This year with the changes by March we had paid out a very large amount of money and then pop, now we are through some kind of a door and there is no cost to any of my husband's medications when using Medicare related Part D/ Wellcare Drug insurance. We just have found that being prepared to put out that amount at the beginning of each year will be the ongoing challenge and plan. I was fascinated with the free Creon from the Abbvie company by "whipple 2232" comment. You are fortunate. We even have had periods that we have had to search for a pharmacy source for the Creon and switching pharmacies for one that can access it. (We live in a large metropolitan area. ) We were doing well at our local Fred Meyer Pharmacy until a year ago and then poof, it was no where to be found. We finally did a mail order pharmacy, but found that it wasn't part of our Part D program at the beginning of the new year. Currently we are getting it through Costco, but we must give them heads up to have it on hand. Clearly far more expensive and difficult to obtain than insulin. The bottom line is that without an adequate dose of Creon absorption will not happen well. He was on a lower dose for sometime after surgery with multiple stools daily, an increase to 36,000 pill size doses changed that to more normal stool pattern, thus increasing absorption for him. What was fascinating to me was to learn that without taking the prescribed proton pump inhibitor, an alkalinizing medication) 30 minutes before the first meal of the day his stomach would stay acidic. When the stomach is acidic then the Creon breaks down there reducing its usefulness rather than below that in the intestine where the absorption for many nutrients takes place. We found also that iron and calcium want acidic stomach fluid to begin their digestion at that point, so due to that he has deficits in iron and calcium levels. (He also has no pylorus, lacks 1/3rd of his stomach, has no duodenum, spleen or gallbladder. Thus missing a lot of enzyme.) There are some absorptive qualities of iron & calcium ongoing in the small intestine that supports absorption but he has had to have IV ferritin twice during the last 5 years post pancreatectomy although we document the iron intake and it is over twice that of the minimum daily needed and he isn't on chemo now. This is my understanding, check with your prescriber on that information as everyone may have a bit different surgery and thus medication needs. Only follow your prescriber's advice. His exhaustion decreased with the Ferritin infusion from his oncologist. Just this week he received an infusion of Zometa for bone hardening to decrease the osteoporosis. He is also 80, so there are likely lifetime issues that precipitates his needs. Our Endocrinologist for diabetes is also a bone specialist. I have found that asking questions for guidance ongoing from our medical team is the most informative and healthful way to precede, with the problems. No one answer fits all.

The new medicare out of pocket max is $2000 a year for prescription drugs. Sorry to strike a political point here but that was passed under Biden's IRA (inflation reduction act).
So when my wife spends her first $2000 for prescriptions, all drug costs for the remainder of the year is zero. ZERO! That means a lot when she also takes Creon, but she takes many more than your husband and we were spending between $500 and $1200 a month depending on whether she was in the initial stage, doughnut hole or catastrophic stage. But now $ZERO after the first $2000 out of pocket. My wife also takes a drug that if someone didn't have insurance would cost $18,000 per "month". But now $ZERO after the first $2000.
- More important. You say your husband had his pyloric and duodenum removed with the pancreas. And he takes an antacid proton pump inhibitor? Like you said, with a normal duodenum the acid is neutralized when it goes into the duodenum. But without the duodenum, acid goes into the jejunum (the part of the small intestines that comes after the duodenum) that the surgeon now attached to the stomach since he/she cut away the pyloric and the duodenum. So if not neutralized by the proton pump inhibitor, this acid can cause ulcers in the anastomosis (the connection made by the surgeon to the jejunum). So taking the PPI (proton pump inhibitor) can prevent damage from the acid.
How do I know all of this? My wife is an eight year pancreatic cancer survivor without a pancreas, pyloric, duodenum, spleen, gallbladder and just had a life threatening gastric bleed. Please speak with your husband's pancreatic surgeon about taking the PPI indefinitely, like forever.

Wow thanks for your excellent comments! I love to hear how your wife has made it these many years. Bruce is now going on year 6. Lots of ups and downs and then the aging issues that come with being 81 as well. He did get an ulcer at one point but no one could give us a reason, we just figured the body was just fighting for itself and not succeeding. Fortunately, we did an experiment. We tracked all of his calcium, protein and iron intake and he had been getting far over the MDR. In studying absorption I ultimately learned that all three want an acid stomach. We were started on the PPI with the theory that I stated in my comment we hadn't heard what you stated above! {Good information!.] So to get his iron into the normal range, we tried giving him iron about midnight thinking the stomach maybe more acid then. But it didn't help, a little more study and I found that he since surgery lacked a transporter from the pancreas to the liver. So Oncology confirmed that and started him on Ferritin IV therapy when warranted. Made such a difference. Then from continued study, I found that the calcium and protein needed the acid as well. He drinks Ripple Milk, pea protein, which is highly absorbable with very little fat to cause gas. 8oz has 440 mg of calcium and 8 g of Protein. So for this month long experiment - he woke up about 6:30 a.m, and had 8 oz Ripple with Creon and NO proton-pump inhibitor. Then sleep for a while longer and then have PPI 30 minutes before breakfast. After a month and after getting routine lab work done, hadan appt with the pancreatic internist to discuss our concerns about calcium/protein absorption (hubby had 4 vertebrae compressions fractures that fall before we did the experiment. ) . For the first time in 5 years since the pan. surgery his Calcium was up in the normal range and his protein and albumin at last were as well!! The MD, smiled and said no when we asked if we really needed to take the omniproazole or could we work a system to enhance absorption and continue to take it. He said for one thing elderly people have alkaline stomachs more commonly than acid, and also that the Creon now had a hard enough shell to pass through the stomach to the intestine uninterrupted. So wonderful to learn this!! So he has begun gaining back more energy now. What you said about the ulcer formation is so important as they have wondered why he has a bit of bump formed at the stomach outlet, maybe where an ulcer was early on. Clearly we should be watching for a problem here, as he is also on Eliquis so bleeding can happen easily. Your message is so timely in alerting me to any possiblity of issues. Yes, we are enjoying the for thought of President Biden, also his impetus on cancer care research and dealing with the funds, as 2000 quickly leaves our pocket book in a month or so into each new year. Praise God, 3 years ago, the DNA evaluation of my husband's tumors was done. He had metasized to the adrenals 6 mo after surgery, but the chemo just was n't working . The lead Gastric Oncologist found that immunotherapy Keytruda could treat the situation. Which is unusual for pancreatic cancer and hubby had 2 tumors on his pancreas. Well the keytruda zapped it out of his body as far as they could tell on the next 3 month CT scan. ( we know pan. cancer can hide. ) He contined the therapy up to the 2 year limit of it, and did stop due to a side effect which has gone into remission now. I appreciate so much talking to another spouse of a heroic cancer patient. Would love to correspond more about your journey. Bruce also said he is so happy for you folks. The surgeon said at the beginning that my husband would be taking the PPI likely always. Hopefully hubby isn't in any real danger, So did you have absorption problems?