← Return to Transplant patients - anyone get anemia or Parvo Virus?
DiscussionTransplant patients - anyone get anemia or Parvo Virus?
Transplants | Last Active: 57 minutes ago | Replies (67)Comment receiving replies
Replies to "@caretakermom It sounds like your hubby becomes easily over immune suppressed. Whenever they try to adjust..."
Connect

@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.