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Transplant patients - anyone get anemia or Parvo Virus?

Transplants | Last Active: 57 minutes ago | Replies (67)

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@caretakermom
It sounds like your hubby becomes easily over immune suppressed. Whenever they try to adjust up, there is a problem.
It's very possible that the correct dosage of Myfortic for hubby was the reduced dosage they were using during CMV, along with his TAC.
At that lower dosage, did the CMV return or any signs of rejection?
Or during the reduced dosage of Everolimus was there any anemia or signs of rejection?
Immune Suppression is a fine art. The transplant folks like to run a high to avoid any chance of rejection. Then, when a virus or trouble like anemia, leukopenia, neutropenia hits, they know it's too high (over suppressed).
Maybe discuss the possibility of returning to the meds and lower dosages when hubby was not rejecting, not getting sick with CMV and not getting transfusions for anemia.
How does your local nephrologist feel about all of this?
Does he like the idea of retuning to a lower dosage of Myfortic with TAC?
Or the lower dosage of Everolimus with TAC? Ultimately, if he had the final say, where would he like to land regarding the meds and dosages? It's important to know his thoughts so he can advocate for hubby.

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Replies to "@caretakermom It sounds like your hubby becomes easily over immune suppressed. Whenever they try to adjust..."

@hello1234

During adjustment period of Myfortic, I remember asking the nurse if it was OK to stay at 360mg BID. She said no because Mayo wants their patients at 540mg. Ultimately, we would want to eliminate prednisone, and go with whichever med at a dose that would prevent rejection but also not overly immunized.
If I were hubby, I would probably stay with Everolimus because it has been working well, other than the increase in dose causing anemia. If Mayo Az says it's OK to stay at a lower trough level-- lower than whatever their standard is, prevents rejection then I would stick with Everolimus. Even though Everolimus is a generic drug(brand is Zortress, it's a very expensive drug but worth it. It costs much more than the other ones because it's also used by cancer patients. For my hubby, the thing to watch for (we now know) is anemia. But others have struggled with very high cholesterol, mouth sores and protenuria(bad for the kidney). I wish Mayo had warned us about anemia but I guess they didn't think it would be in issue because hubby was taking such a low dose compared to what cancer patients.
Our home neph says to hang on to the Everolimus that just got delivered to me(the same day was told to pause it) because his words - might go back to it.
Some other ppl do Belacept (sp?) infusion instead of taking pills. Have you heard anything about that? I once asked the home neph he says not to do it because it's still relatively new, nog proven, and not the gold standard. I'm thinking if no other drugs can be tolerated by hubby, I'm wondering if Mayo would advise doing Belacept infusion. Most people do it once a month in conjuction with taking other txplant meds like Tacrolimus.
Our home neph needs Mayo advice when it comes to what transplant medicine to use of the patient. He also lets the txplant center dictates target trough level. He says he cannot make these decisions - must be made by transplant nephrologist.