Transplant patients - anyone get anemia or Parvo Virus?

@hello1234

Are/Have you ever been on predisone as your txplant regimen? Mayo used it for hubby but only initially post transplant. Was taken off a few months after he was discharged. He did not do well on it because blood sugar shot up. I have feeling that Mayo will add it back so Ev dose can be adjusted down. I

@caretakermom
What do you think of returning back to Envarsus XR snd Cellcept/Myfortic?
Other than the recurring CMV, was there any other reason they fid a full med change to Everolimus?
Is it possible that hubby would do fine returning back to Envarsus XR (TAC) and a lower dosage of Cellcept/Myfortic to avoid the CMV?
With diabetes, I am not crazy about putting hubby on prednisone is ot can be avoided.
Was a lower dose of Cellcept/Myfortic attempted? What dosage was he taking of Myfortic when the switch to Everolimus occurred?

@hello1234

Hubby was never on Envarsus XR; he has been on Tacrolimus since transplanted.
The only reason they switched him from Myfortic to Everolimus was because of the CMV recurrence.

I don't remember what Mycophenolate dose hubby was taking - they switched to Myfortic on week 3 post txplant. Not sure if a lower dose of Myfortic is feasible for hubby either. I think Mayo switch med because they were not happy about the dose tolerated by hubby(without get CMV) - nurse said it didn't meet the standard dose.

Mayo's plan for hubby is to get off of Everolimus (if that is indeed the culprit of anemia) and get on predisone( not crazy about it ). Home neph was saying that even if we wanted to switch to a different txplant med, we couldn't just switch immediately - must be on prednisone for a time then switch.

Hopefully by discontinuing Everolimus, hubby's hemaglobin will improve and slowly recover from anemia. The hematologist is pretty certain Everolimus is to blame because all relevant labs point to bone marrow suppression. Don't think you even need a bone marrow biopsy to prove that the medicine is causing havoc. I mean, if we discontinue Everolimus and his CBC panel becomes normal - recovers from anemia, then common sense tells you that the medication is the cause, right? Anyways, Mayo Az wants bone marrow biopsy done and I have relayed the msg to hematologist. He can discuss with our home neph to determine if one is necessary.

Meantime, the home neph ordered 5mg prednisone to be taken daily along with normal dose of Tacrolimus. I suspect once hubby recovers from anemia our home neph will discuss with Mayo Az if he can return to Everolimus(dose/trough level TBD) or more feasible to switch to a different medication - the choices being Mycophenolate(no go because diarrhea) or Myfortic (perhaps on a lower dose). Then they can perhaps eliminate prednisone from the regimen.

@caretakermom
Is hubby currently taking Tacronlimis and 5mg prednisone (no Everolimus)?

@hello1234

Today, 07/31/26, he will start the prednisone 5mg daily, with Tac BID, no Everolimus. Just picked up prednisone Rx last night. Home neph says to take in in the a m. Should have started prednisone yesterday but didn't get a call from home neph, until I texted to ask what Mayo's plan(like i was saying home neph is very busy doing a million things at a time!). So I'm glad I reached out to him yesterday - i normally don't like to text him unless necessary.

Anyways, this morning hubby will go in for blood transfusion. Hopefully he will feel better and his hemoglobin will gradually recover . His hemotologist follow up is in 3.5 weeks.

You mentioned something earlier about digging thru history notes on the Mayo patient portal to see what doses he was on with Myfortic. I'll have to spend some time looking thru it to find the exact dose. I also have some leftover Myfortic scripts I can check the bottle label for dose.

BTW, I just placed a 90 day order of Everolimus(generic but expensive drug ) and was told to hang on to it because may re use in future, per home neph. It was delivered yesterday, the same day was told to pause it! We will discuss more in details about possible drug change/remain on Everolimus at next appmt with home neph.

My hubby had a really difficult time managing blood sugar and weight with prednisone in his txplant regimen. The other disadvantages of prednisone are thinning bones, puffiness, insomnia, etc. Will have to tolerate it for a time but hope Mayo Az/home neph can help find a drug to replace it permanently.

One other thing - I was on my facebook support group and compare to others who are currently on Everolimus, my hubby's increased dose of 1.25 mg is not that large compared to some currently of 3 mg. As stated in the Everolimus common side effects, the degree of anemia varies individually.

@danab

Do you also take prednisone? Hubby's home neph has taken him off of Everolimus, added predenisone. His new txplant regimen is prednisone(new) and Tacrolimus(same dose) until his anemia recovers.

@hello1234

The Myfortic dose prior to Everolimus, says take 180mg, e tablets, BID. So 540mg 2x/daily. I remember having to adjust down to 2 - 1 tablet while battling CMV. Then raised back up to 3 and CMV would recur. Never BK virus though. Adjusted for about 6 months finally Mayo switch to Everolimus in Dec 2022 I think.

@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.

@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.

@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.