Transplant patients - anyone get anemia or Parvo Virus?

@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.

@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.

@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.

@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.

@caretakermom I do know that due to other problems like with me with the Parvo and CMV they only have me on Tac they tried one of the other ones as a second when they took me off Myfo I seem to remember Sirolumus but that caused problems with my mouth and sores which made eating difficult. so now I'm just on the one. I know they are willing (even this they don't like it) to go to one anti rejection med . now I've had no history of rejection at all. Did you husband ever have a rejection episode? it may explain why they are concerned about changing.

@hello1234

What is current customized dose of Myfortic and Tacrolymis? I had tried to set up appmt with Mayo neph but nurse coordinator says to go thru home neph. I will speak with our local about customizing a dose(trough level) for hubby.
Mayo wants a bone marrow biopsy done to show no other issue(s) is contributing to anemia. It is scheduled for 2nd week of Aug.

@hello1234

What is current customized dose of Myfortic and Tacrolymis? I had tried to set up appmt with Mayo neph but nurse coordinator says to go thru home neph. I will speak with our local about customizing a dose(trough level) for hubby.
Mayo wants a bone marrow biopsy done to show no other issue(s) is contributing to anemia. It is scheduled for 2nd week of Aug.

Hi @caretakermom
What I mean by a customized immune suppression plan is when the doctor adjusts the medications and dosages according to the patient.
Here is my understanding of hubby's medical history:
At certain dosages, hubby does well. No rejection and no illness.
Then they increase the dosage according to policy, and hubby becomes sick.
With Myfortic and TAC, hubby did well at the lower dosage. No rejection and no illness. When the Myfortic dosage was increased, he got sick with recurring CMV virus.
Then instead of lowering the Myfortic, the Myfortic is changed to Everolimus. And here we go again....
With Everolimus and TAC, he did fine at the lower dosage. No rejection and no illness. When the dosage was increased, he was hospitalized for anemia and needed a transfusion (and someone requested a bone marrow biopsy).
The UCLA hemotologist is saying no bone marrow biopsy is needed. It's the immune suppression, running too high.
Right?

@danab

No previous rejection. Did ultrasound biopsy at Mayo during year 1 and 2 and everything looks good.

What Tac dose are you taking and what is your trough range?

@hello1234

I understand what you meant bya customized immuno suppressant plan - to customize the txplant regimen that works for hubby.

With Tac and Myortic, Mayo neph was not happy with the lower dose hubby was on when he had CMV. They did not test him for rejection on the lower Myfortic dose - they decided to switch to Everolimus instead.

He did well on Everolimus and Tac, until this past March when the dose was increased to meet target trough range. He got anemia instead and the hematologist says all labs point to bone marrow suppression. Hubby was on the lower Everolimus dose at his 2 year check up Mayo and the ultrasound kidney biopsy showed no rejection. I don't know at the lower dose now, since it's not meeting target trough range if there is possible rejection. Home neph says Mayo "not happy" with the lower dose because not in target trough range.
UCLA hematologist is convinced it's the med that is causing anemia but has ordered a bone marrow biopsy because Mayo Az wants one done. UCLA hematologist says no signs of hemolysis, all labs consistent with BONE MARROW suppression, not immune suppression. I don't necessarily think bone marrow suppression is equivalent to immune suppression. I believe if hubby were immune suppressed by Everolimus, he would have had Parvos, CMV, BK, etc. The higher dose of Everolimus causes severe toxcity for hubby over time because his hemoglobin dropped by more than 30% and his CBC labs are abnormal. Hematologist ordered blood infusion done at a hospital as out-patient this past Friday. He is off Everolimus now and his hemoglobin should improve but takes time to gradually recover. He is scheduled for bone marrow biospy, requested by Mayo, in 2 weeks.