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Transplant patients - anyone get anemia or Parvo Virus?

Posted by caretakermom @caretakermom, Jul 25 9:43pm

Hi everyone,

Transplant patients, have you ever had an episode where you're anemic and your CBC panel is low?
My husband is on Everolimus and Tacrolimus. Long story short, in March 2026 he had to increase both meds to stay in target trough level. Since then his hemoglobin has been lowered progressively to current where he is anemic, hemoglobin 8.4 from 13.
Mayo Az is out of state to us so care was turned over to home nephrologist. Home neph wants to rule out internal bleeding so this coming Tues hubby getting colonoscopy and endoscopy. Home neph contacted Mayo Az and they do NOT think it's Everolimus, even though one of its known common side effects is anemia. Mayo Az thinks it's Parvo Virus so we are currently waiting for the result of the Parvo Virus PCR.
Anyone ever experience anemia years post transplant and does anyone have any experience with Parvo virus?
Looking forward to your comments. Any inputs will be greatly appreciated.

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caretakermom | @caretakermom | 6 hours ago
In reply to @hello1234 "@caretakermom I just saw your request for my dosages. I take 2.75mg Envarsus XR (my TAC..." + (show)
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@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.

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@hello1234

When you were going thru making changing to your txplant regimen, did you work with your local neph or were you able to meet with your transplant team to make the adjustments?

I sure wish the Mayo Az team finds a customized plan for hubby. And I wish we could work with them directly on that. Instead, I'm told by the Mayo txplant nurse coordinator to work with our home neph who is really the liaison to Mayo.

Next appointment with home neph is on 09/01 -- i think he's expecting to see hemoglobin improves and bone marrow biopsy result. At this appmt hopefully we can get clarifications of hubby's customized txplant regimen. I will definitely advocate for him to get off prednisone if that is NOT medically necessary insofar as it addresses rejection prevention. If we still need clarifications I will ask home neph to help us get an expedited video appmt with Mayo transplant nephrologist so that we can work directly with the Mayo team (Have already been told they will prioritize current txplant patients over us).

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hello1234 | @hello1234 | 38 minutes ago
In reply to @caretakermom "@hello1234 When you were going thru making changing to your txplant regimen, did you work with..." + (show)
Profile picture for caretakermom @caretakermom

@hello1234

When you were going thru making changing to your txplant regimen, did you work with your local neph or were you able to meet with your transplant team to make the adjustments?

I sure wish the Mayo Az team finds a customized plan for hubby. And I wish we could work with them directly on that. Instead, I'm told by the Mayo txplant nurse coordinator to work with our home neph who is really the liaison to Mayo.

Next appointment with home neph is on 09/01 -- i think he's expecting to see hemoglobin improves and bone marrow biopsy result. At this appmt hopefully we can get clarifications of hubby's customized txplant regimen. I will definitely advocate for him to get off prednisone if that is NOT medically necessary insofar as it addresses rejection prevention. If we still need clarifications I will ask home neph to help us get an expedited video appmt with Mayo transplant nephrologist so that we can work directly with the Mayo team (Have already been told they will prioritize current txplant patients over us).

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Hi @caretakermom
Is this the plan?...
Currently hubby is completely off Everolimus, the offending drug suspected to be causing the severe anemia.
To replace the Everolimus, hubby is temporarily taking 5mg Prednisone until September 1st appointment.
The local neph feels that the anemia should begin to resolve over the next few weeks. (That will be the greatest confirmation that the drug is the problem).
Also, to double confirm that the problem is the Everolimus, the UCLA hematologist is preforming a bone marrow biopsy.
Then, on September 1, you have an appointment to meet with your local neph.
He will have all of this new data (the bone marrow biopsy result and a confirmation that hubby's anemia is resolving with the removal of Everolimus).
At that meeting, your local neph will give you his thoughts regarding the best plan moving forward to replace the predisone and then he will reach out directly to Mayo Arizona to consult.
It sounds like an excellent plan to me. Do I understand the plan correctly?

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