Anti-rejection medications: Do you use a Specialty Pharmacy?

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.

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

@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.

@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

@future thanks for bringing up the discussion about the Mayo Specialty Pharmacy. We have shared your concerns with our pharmacy and leadership team. They wanted me to let you know that most importantly, Mayo Specialty Pharmacy will still fill the Envarsus XR prescription if you are at risk of running out before you can find a new pharmacy. If that is a concern, please call the transplant center and we can work on solutions.

Going forward, one suggestion is to consider another specialty pharmacy. Our team is currently recommending Amber Specialty Pharmacy, which like Mayo Clinic Specialty Pharmacy, is designed to support patients with complex conditions such as transplant, chronic illness, and rare disease. The Amber Specialty Pharmacy may also be able to provide support with medication management, side effects, prior authorizations, and out-of-pocket costs.

If you are at risk of running out of any immunosuppressive medications, please don't wait to contact the Mayo pharmacy, your nurse coordinator, or the Amber Specialty Pharmacy asap. Thanks!

@future, I have used the Mayo Specialty pharmacy since my transplant in 2009. Deciding to go that route was one of the best decisions that I could have made. As of Jan 1 of this year, I have had to transfer my care to my local transplant center at University of Kentucky. On my introductory visit, the doctor immediately set me up with the specialty pharmacy there. With no medicine changes he renewed my prescription and I am satisfied. I remember when, before my transplant, my local pharmacy did not carry my meds, and I had to remind them ahead of time to pre-order, and even then they sometimes struggled to get the full refill.
I see that you are in a really frightening situation, and I also see that Kristin has shared information from Mayo. I hope that you have already/or will soon contact the Mayo Specialty Pharmacy as she suggested. Also, I'm not familiar with the Amber Specialty Pharmacy, but it sounds like a good possibility and worth contacting. I'm wishing and hoping for a solution so that you can continue to get your medications delivered in a reasonable time frame.

I use Bergen Pharmacy, a specialty pharmacy serving the NY and NJ area.

I was using my pharmacy at USC and now I use Center Well pharmacy and I get all my meds mailed to me every 3 months and it’s works out great I’m on Medicare and have a medication 💊 plan added on $92 a month otherwise out of pocket over $8000 a year and they have worked out very well plus I have extra now before it was always to the wire of running out

@keggebraaten thank you for taking the matter to the leadership. The stress I have been through was
huge between being “ rejected” from my strongest supporter “Mayo Speciality pharmacy “ to be “pushed around” by my insurance customer service. Mistakes left and right by customer service, first saying CVS Speciality is in network, finished paper work, then they were declined by insurance because they are out of network. Then went back to insurance just to get correct information and went through a nightmare as the answer depended on who picked up my call. Shouting or naive answers to go to the neighbourhood Walmart local pharmacy !!
And here I am every day calling another speciality pharmacy or drive my car and talking to every local pharmacy nearby.
Wondering is this real or a nightmare to wake up from! Then I went to the local Walgreen pharmacy and found that angel “pharmacist” she was on full board with me as if my problem was hers. She asuured me to get these meds by ordering every month “Envarsus XR “from the manufacturer ahead of time as they don’t have it in stock and using FedEx to get them to the pharmacy and I pick up there. I trusted her sincerity. I realized I have a risk no mater what and trusted her as my minimum risk.
They got me Envarsus for this month on time.
So my stress level went down.

I called the desk of the transplant center at Mayo and to complete the stress cycle, the woman who picked up the phone was rude saying things like her job is scheduling or call us in a week if the problem was not solved, I said i called the only number I have when I face serious problem like this but her attitude was bad! I actually drafted a complaint against her but I decided to focus more on how to get the meds.
I am sure all that stress has affected my new kidney! as later appeared in my monthly blood test.
Thank you
Magda

@future, Magda that is stressful. I just want you to know that I got your message and will contact you privately. In the meantime, I hope that this information provided gives you a reliable specialty pharmacy source.