Anyone taking Rezurock?

Hi @clock456. I’ve only found one other BMT member who has mentioned Rezurock for GVHD but that was in reference to possibly starting the drug. I’m not sure if she did. I’ll tag @alive. She may be able to offer her 2 cents worth. This is her comment of reference. https://connect.mayoclinic.org/comment/634576/

Some of the specialty meds are sure spendy. I’ve had two experiences with meds from a Specialty Pharmacy. (SP) First for my AML mutation and then following the BMT. Even though the meds were out of network, they were covered after a note from my BMT team and discussion with my insurance case manager. Quite often the SP’s will offer connections for grants to help defer costs or discounts from manufactures. Have you spoken with your husband’s insurance case manager or the speciality pharms?

What type of gvhd is your husband experiencing?
Was he initially taking Tacrolimus post transplant?

I haven’t taken Rezurock, since Jakafi is working for me. My doctor mentioned it as the next step in case Jakafi wasn’t working or my red blood cell count was too low. Fortunately, my blood count stabilized after a drop and I didn’t need to go on Rezurock.

As far as my experience with specialty pharmacy, my Jakafi comes from them. My insurance has to approve it every year and then I receive my monthly supply of meds my mail. The company contacts me by text when it’s time for a refill and I get it within 3-5 days. I only pay my regular deductible. I have Blue Cross/Blue Shield.

Rezurock is a newer drug and getting it approved by the insurance may be challenging. I agree with Lori that your transplant team has a lot of experience navigating insurance approvals for drugs like that. My BMT Mayo doctor is in Phoenix and they really stepped up to get everything arranged for me. Hope your doctor’s office is able to help you navigate insurance and specialty pharmacy as well!

The Jakafi made my husband's white blood cells drop too low. When he started the Jakafi, his WBC was 7.4 and his ANC was 6.39. After 5 weeks on it his WBC was 1.0 and his ANC was 0.10. It didn't seem to affect this red blood cells or platelets.

He started on the Rezurock on Feb 28, so we will see how it goes. His next blood test is the 7th.

@loribmt

He has grade 2 skin GVHD. Steriods help but they make his sugar very high and it is not for long term use. He was taking Tacrolimus but it affected his kidney function, magnesium, and potassium levels so they had to take him off of it. Then, the Jakafi affected his WBC count too much. So, now he is on Rezurock.

BCBS covers all but our co-pay and I think the manufacturer is covering that since we have no out of pocket expenses. It is $20,000 per month for 30 pills. It took a few calls to BCBS to get it approved. But, it wasn't too bad; two out of three of the people I spoke with were extremely helpful.

It is still hard to believe he is already 6 months post transplant. In 9 more days, it will be a year since his diagnosis. He is doing better every day. All of his tests report no leukemia and 100% donor cells in blood and marrow. In terms of GVHD his has been mild. We count our blessings every day and are finally starting to breathe a little.

I’m glad Rezurock is working out for your husband. Each person reacts differently to Jakafi, but I hope this new med works well for him.

I’m 8.5 years past my transplant - my life is pretty much back to normal. The first year post transplant was the hardest.