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Transplant patients - anyone get anemia or Parvo Virus?

Transplants | Last Active: 3 hours ago | Replies (61)

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@hello1234

I understand what you meant bya customized immuno suppressant plan - to customize the txplant regimen that works for hubby.

With Tac and Myortic, Mayo neph was not happy with the lower dose hubby was on when he had CMV. They did not test him for rejection on the lower Myfortic dose - they decided to switch to Everolimus instead.

He did well on Everolimus and Tac, until this past March when the dose was increased to meet target trough range. He got anemia instead and the hematologist says all labs point to bone marrow suppression. Hubby was on the lower Everolimus dose at his 2 year check up Mayo and the ultrasound kidney biopsy showed no rejection. I don't know at the lower dose now, since it's not meeting target trough range if there is possible rejection. Home neph says Mayo "not happy" with the lower dose because not in target trough range.
UCLA hematologist is convinced it's the med that is causing anemia but has ordered a bone marrow biopsy because Mayo Az wants one done. UCLA hematologist says no signs of hemolysis, all labs consistent with BONE MARROW suppression, not immune suppression. I don't necessarily think bone marrow suppression is equivalent to immune suppression. I believe if hubby were immune suppressed by Everolimus, he would have had Parvos, CMV, BK, etc. The higher dose of Everolimus causes severe toxcity for hubby over time because his hemoglobin dropped by more than 30% and his CBC labs are abnormal. Hematologist ordered blood infusion done at a hospital as out-patient this past Friday. He is off Everolimus now and his hemoglobin should improve but takes time to gradually recover. He is scheduled for bone marrow biospy, requested by Mayo, in 2 weeks.

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Replies to "@hello1234 I understand what you meant bya customized immuno suppressant plan - to customize the txplant..."

@caretakermom
I just saw your request for my dosages.
I take 2.75mg Envarsus XR (my TAC target is 6 to 8 blood level) and I take 250mg Cellcept bid.
Remember, this is my personal immune suppression plan designed by a Mayo doctor for ME after multiple illnesses.
This plan has kept rejection away (I am happy to report excellent quarterly CareDx Allosure blood tests), no CMV, no BK, no elevate liver enzymes, no leukopenia, etc.
Yes, it's below the "standard dosages" for Cellcept but these work FOR ME.
I am a 5'4" lady weighing 120.
I am not saying it's the right dosage for hubby. But I do believe there is a plan for hubby that will get him into his own personal immune suppression sweet spot.
Don't accept a generic answer, these are high-risk drugs.