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Transplant patients - anyone get anemia or Parvo Virus?
Transplants | Last Active: 57 minutes ago | Replies (67)Comment receiving replies
@caretakermom Yes I was on it the first 6 weeks after transplant and it was reduced every couple of weeks untill I was taken off of it completely . haven't needed it since. But that was what they called the standard dosing along with 5 other medications. most of them were reduce over time and unless I had a problem were taken off them by 6 months. now I had a problem with Parvio which I ended up getting IV type treatment. I also had a problem with CMV and that one they put me back on one of the standard ones I don't remember the name but I was on that for a while until that problem was not found anymore. So I would think this may be temporary or I've know of some who had to take it for a problem that continues. So unfortunately we all realize that things can always change and will need other treatments as our journey continues.
How is He handling it? I know I had a lack of appetite when I was on it. Plus when it was a high dose it made certain foods lack flavor. I was so happy when they started reducing the dose as that's when food problems became better.
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@danab, @hello1234
My husband was on prednisone, Tac and Myfortic early on post transplant but was taken off of prednisone after 6 weeks. Then during month 3 was when he had CMV and during this time of battling CMV, they lowered the Myfortic and put him back on prednisone until Mayo switched Myfortic to Everolimus. He was already diabetic pre transplant and the prednisone spiked his blood sugar - even though he was eating a low carb diet. Then once prednisone was eliminated his blood sugar stabilized and he was able to control it much better.
While on prednisone, my husband appetite got bigger, not smaller. As a result he gained weight. Then after they took him off, his appetite and weight decreased, though he wights more now than pre-transplant.
I sure hope prednisone is temporarily because it is also a bone thinner and he was diagnosed with weak bones (on left hip) on dexa scan at Mayo during one of his annual check ups.
Our hematologist is very confident his current anemia is caused by Everolimus and needs to get off of it completely to recover from anemia. But Mayo still wants a bone marrow density done, even though all hemotologist labs show no sign of hemoloysis - labs are consistent with bone marrow supppression. It sounds like Mayo want to be certain that the bone marrow suppression is indeed being suppressed by Everolimus. Our hematologist called this past Friday and a bone biopsy has been scheduled in 2 weeks.
For now, the home neph says to get off of Everolimus completely and replace it with prednisone. Until a different transplant drug replaces the Everolimus, or if Mayo is Ok decreasing the Everolimus dose, hubby has to be on prednisone. At this time, it doesn't sound like Mayo is happy with a lower Everolimus dose, so likely have to switch to a different drug. Everolimus is the third drug that he has been switched by Mayo, so I don't know what other drugs his body can tolerate without it causing damage to his kidney!! A drug change or dose change has under Mayo's advice, our home neph cannot make that kind of decision. I'm very concerned about it.