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Anti-rejection medications

Posted by future @future, 1 day ago

Hi All,
i am a kidney transplant for 1.5 years done at Mayo clinic Rochetr MN. so far so good. Since the beginning i received my anti-rejection meds through Mayo Clinic Specialty pharmacy to be delivered to my home in Arkansas. all went smooth. my Tacrolimus twice a day was changed to Envarsus XR once a day (version of tacrolimus) and all meds were delivered from same specialty pharmacy. The difference was that Envarsus XR is a brand name and copay coupon was provided by the manufacturer to me and was very helpful but either the coupon or the price of the medication made the refill on monthly basis and not three months. That caused some stress, but Mayo specialty pharmacy cooperated. Suddenly 2 weeks ago the pharmacy sent a massage addressed to all patients that these antirejection meds are no longer specialty meds and patients need to find alternative pharmacies. Just like that making obtaining these meds my responsibility, I searcher all local pharmacies, and must be in-network with my insurance. I came up with some options; all carry risk of receiving on time for the Envarsus XR due to its monthly refill.

Local pharmacies in nearby towns carry for 3 patients only so they don't stock or other one never dealt with but can order. The DIRDI pharmacy can deliver to home but takes 7-10 days to deliver or expedited 3-7 days to deliver at $25. Even that option is risky making me constantly worry about receiving on time. I need to decide fast on least risk! among these options.
I wonder what other patients do to get their meds; I am not the only one who was relying on Mayo specialty delivering the meds.
Thanks
Magda

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craigcraig | @craigcraig | 1 day ago

Hi Magda. No silver bullet for you or even a great suggestion. I live in a suburb and have no issues getting TAC. I started on 24 different meds after my transplant 2.5 years ago but am now down to 10. But TAC is teh one I need every day for life. Glad you are aware you need TAC as a must. Sounds like you have some Ideas. I don't have an answer but maybe , talk to Mayo for more suggestions, stock up a buffer of TAC in case of mail or transportation issues, try to set something up with 2 or 3 providers in case one falls through now or later. Best of luck.

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future | @future | 22 hours ago

Thank you for your response. I sent the same message also to my team care in Mayo transplant center, waiting, as I don’t know any other patients in the region I live in. I also thought of your idea to have a backup amount, this Envarsus is brand name and my information from searching online is that 3 days cost $200 out of my pocket, so 2 weeks will be $1000 out of pocket. Before I do that, I thought to ask other patients about experience with BIRDI or local pharmacies in small towns. Thank you. Magda

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stephanierp | @stephanierp | 6 hours ago
In reply to @future "Thank you for your response. I sent the same message also to my team care in..." + (show)
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Thank you for your response. I sent the same message also to my team care in Mayo transplant center, waiting, as I don’t know any other patients in the region I live in. I also thought of your idea to have a backup amount, this Envarsus is brand name and my information from searching online is that 3 days cost $200 out of my pocket, so 2 weeks will be $1000 out of pocket. Before I do that, I thought to ask other patients about experience with BIRDI or local pharmacies in small towns. Thank you. Magda

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@future
Hello and congratulations on your healthy transplant! I am 6 and 1/2 years post kidney transplant.
I use CarelonRX (MyRx@pharmacy.anthem.com). Thru my Anthem insurance. Not sure but I believe most insurance plans have a version of the specialty RX program. If your Insurance has such a program, that is the one I would go with.

I used to get mine through my local pharmacy, but had a scare when one month they simply did not have the drug in stock. Evidently a new person had had a transplant in the area and claimed the meds before I did. That’s when I switched to Specialty RX.

The good news is most pharmacies will make you a priority. So the month that I had trouble with my local pharmacy they contacted all other pharmacies in the area and got medicines to me within 12 hours.

Specialty RX have been great to deal with. And yes, they can overnight it if necessary.

My meds used to be on a monthly basis and I would call in when I was down to seven days of meds and they always got it to me in time.
I contacted my doctor last year and changed my prescription to three month prescriptions and they were able to do that.

However, I was not taking the type of medication you are taking.

Ultimately, if you cannot establish a reliable supply chain of the medication, you’ll need to contact Mayo to let them know.

Perhaps, they will need to change your medication to one that is more readily available. I do not think it will come to that. But it is a possibility.

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future | @future | 4 hours ago
In reply to @stephanierp "@future Hello and congratulations on your healthy transplant! I am 6 and 1/2 years post kidney..." + (show)
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@future
Hello and congratulations on your healthy transplant! I am 6 and 1/2 years post kidney transplant.
I use CarelonRX (MyRx@pharmacy.anthem.com). Thru my Anthem insurance. Not sure but I believe most insurance plans have a version of the specialty RX program. If your Insurance has such a program, that is the one I would go with.

I used to get mine through my local pharmacy, but had a scare when one month they simply did not have the drug in stock. Evidently a new person had had a transplant in the area and claimed the meds before I did. That’s when I switched to Specialty RX.

The good news is most pharmacies will make you a priority. So the month that I had trouble with my local pharmacy they contacted all other pharmacies in the area and got medicines to me within 12 hours.

Specialty RX have been great to deal with. And yes, they can overnight it if necessary.

My meds used to be on a monthly basis and I would call in when I was down to seven days of meds and they always got it to me in time.
I contacted my doctor last year and changed my prescription to three month prescriptions and they were able to do that.

However, I was not taking the type of medication you are taking.

Ultimately, if you cannot establish a reliable supply chain of the medication, you’ll need to contact Mayo to let them know.

Perhaps, they will need to change your medication to one that is more readily available. I do not think it will come to that. But it is a possibility.

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@stephanierp Thank you for sharing your experience. yes, the problem seems in the brand name med I take now (Envarsus XR) it is the extended long release version once a day of tacrolimus as the standard short release twice a day prescription caused fluctuations in blood level test results ranging from high to low to high every month causing stress on the new kidney. I appreciate your response.
Magda

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