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Transplant patients - anyone get anemia or Parvo Virus?

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

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@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.

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Replies to "@hello1234 During adjustment period of Myfortic, I remember asking the nurse if it was OK to..."

@caretakermom
Oh no!
I was afraid that is what you were going to say.
QUOTE: "A nurse told you that Mayo wants their transplant patients at 540mg Myfortic bid".
Do NOT accept this generic answer from a nurse.
You need a video consultation appointment with one of the experienced transplant nephrologists at the transplant center to discuss a customized immune suppression plan for your husband and his issues.
I went through this same nightmare until I spoke with a Mayo doctor who customized my immune suppression dosage based on what was happening to me. (Active CMV, BK virus, leukopenia).
Your story is bringing tears to my eyes because I went through the same challenge to find someone knowledgeable to help me adjust the meds correctly. (NOTE: My local nephrologist knew the answer from the start, but he needed to defer to Mayo....but not the nurse!)
Do NOT accept a generic answer from the transplant coordinator or nurse.
Getting the immune suppression dosage customized correctly is too important. As you know!
A nurse saying, "Mayo wants everyone at 540mg Myfortic bid" is infuriating.