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Transplant patients - anyone get anemia or Parvo Virus?
Hi everyone,
Transplant patients, have you ever had an episode where you're anemic and your CBC panel is low?
My husband is on Everolimus and Tacrolimus. Long story short, in March 2026 he had to increase both meds to stay in target trough level. Since then his hemoglobin has been lowered progressively to current where he is anemic, hemoglobin 8.4 from 13.
Mayo Az is out of state to us so care was turned over to home nephrologist. Home neph wants to rule out internal bleeding so this coming Tues hubby getting colonoscopy and endoscopy. Home neph contacted Mayo Az and they do NOT think it's Everolimus, even though one of its known common side effects is anemia. Mayo Az thinks it's Parvo Virus so we are currently waiting for the result of the Parvo Virus PCR.
Anyone ever experience anemia years post transplant and does anyone have any experience with Parvo virus?
Looking forward to your comments. Any inputs will be greatly appreciated.
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@caretakermom
While we are waiting for @danab to respond, I asked Gemini about the parvo virus and kidney transplant patients. The number one treatment is to lower the dosage of immune suppression, or change the medication, to allow your hubby's body to resolve the virus.
Unfortunately, the symptoms of parvo are anemia and extreme fatigue so your local nephrologist is correct to test.
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2 Reactions@caretakermom
Just an FYI:
In an older thread, did you see @danab comment that he was given IVIG infusions for Parvo? It looks like IVIG infusions are intravenous immunoglobulin antibodies to fight the virus. Usually used in conjunction with lowering immune suppression.
Hi @caretakermom @hello1234 is correct on what they did to take care of mine. I got the virus from my donated heart as I never got this as a baby which is usually when you do. But my donor did have it as a child it seems. The official name is Parvo B19. They started me on the IVIG therapy and eliminated one of my 2 Immosupressents. I now only take Tacrolimus and they watch it closely to keep it betweer 5-7ish range. They also test me twice a year now that ive been stable for about 3 or 4 years i believe. I remember around covid time we tried to take me off the therapies and had a couple of positive checks but they were low and now i haven't had a positive test since 2022. My last IVIG was 10/2021 I had about 7 treatments monthly at first then went to every other month. I will warn you tho I had a tough time getting Insurance to OK they are expensive. Make sure you are approved with your insurance before starting as I went thru a lot of pushing by Mayo and myself to get it approved after the fact.
As for getting Mayo's help , That's where I got my infusions, but I Also have an hematologist who could have done it in a local site also in Arizona and it would have been easier to get insurance to cover. I live in Arizona but except for heart related issues I get my other care thru a local PCP and my anemia issues thru a Hematologist.
Also since Im not having any rejection issues Ive stayed on the Tacro only. They check it every 6 months at an outside lab unless Im up at mayo for some other reason. I live 70 miles from Mayo in Arizona.
If they adjust my meds then they go to every 3 months for a while to see if it stays at a good level.
Funny you mention Hemoglobin as I have a tendency to be low. right now Im at 12.2 and its been going down for the last year or so. I'm probably going to make an apt with my Hematologist soon. I typically see him 1 a year since Ive been stable but I have been taking more naps lately and feeling more tired.
Hope I answered most of your questions. Please feel free to ask more if something else comes to mind. Sounds like you husband is having the same exact problem I had.
Blessing
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3 Reactions@hello1234 I was never dana1968, Ive always been danab. the 1968n may be someone else with parvo i have not seen that handle before
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1 Reaction@hello1234
Yes i have responded to a response to a post @danab made but I haven't heard back from him yet.
This is such an uncommon virus that it's not on anyone's radar!
@caretakermom
Correction. @danab has replied!!
@hello1234
Yes I saw @danab comment. IVIG infusions is what I heard to treat Parvo(if hubby tests +). We are going to see UCLA hematologist and will ask if they can get prior authorization for infusion. Hubby is no longer on Medicare and has employer insurance so idk how difficult to get approved.
Home neph ordered the Parvo Virus PCR via Quest and the estimated result is 08/01/26 - blood draw was on 07/24/26. I hope to have the result in another 2-3 business days, before the Quest estimate date.
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2 Reactions@danab
Thank you for responding. Regarding the authorization from insurance, did you have a hard time getting insurance to cover it because you did not get prior authorization? Is this Medicare or employer insurance?
You say you got your infusions via Mayo but had you got your infusions locally, would the local hematologist have to work with the transplant team to set the IVIG dose? Hoping the UCLA hematologist can reach out to Mayo should he needs guidance from Mayo transplant nephrologist. Don't know if we are expected to make the coordination. Our home neph would not be able to make decisions re IVIG infusion dose.
At this time, we are waiting for the Parvo B19 PCR test result. I'm not entirely sure my husband has it because his only symptom is anemia - his CBC panel shows all blood count low/out of range. He is not experiencing any pain such as headache or joint.
What were you symptoms of Parvo B19? It sounds like your team warned you that you would have it since your donor had it, so they were watch out for it. In our case, we have never heard of it until Mayo Az told home neph to check for it last week!
I will be asking more questions as they come up. Thank you for volunteering to shed lights on this virus!
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2 Reactions@hello1234
Home neph ordered the test after talking to Mayo Az neph. I'm not sure home neph is familiar with this virus; otherwise, he would have added to his normal lab test orders. He tests for CMV, BK virus, and Epstien Barr, but no Parvo. I suspect from here on out he will adding it to his lab order on regular basis because it can recur.
Regarding the transplant meds, the home nep says Mayo Az has to be the one to determine drug dosage, trough level and whether a change of meds(Everolimus) is warranted. Remember a few years ago I told you hubby kept getting CMV recurrence when he was on Tac and Myfortic? At that time it was within 1st of txplant so Mayo Az was following hubby. They adjusted the Myfortic down each time when CMV tested positive, hubby would take the drug for the CMV, then when it clears Mayo would then raises Myfortic back to original dose level at which time CMV recurred again. This went on for about 9-10 months, finally was told by transplant neph to switch from Myfortic to Everolimus.
I hope hubby is not having the same issue with Everolimus - adjusted dose causing Parvo Virus. Because Mayo Az will probably have to dictate what medication to switch to, and I don't think they'd want to do that. They also don't want to lower the trough level for a smaller Everolimus dose; neph says Mayo "not happy" with pre-anemic dose!!
I guess we'll have to take it 1 step at a time to see what is the real culprit of his anemia. Could be
1. higher Everolimus dose 2. Parvo B19 virus. 3. bone marrow disorder?
Neph says Mayo does not believe anemia is caused by Everolimus per home neph.
@danab
My husband is 4+ post kidney transplant - Mayo turned over care after 3 years to home neph. We live in Calif so any appointment will be via video. Do you think we'll have a hard time making appointment a transplant neph if home neph recommends it? I'm just hoping they're not too booked up too far out!!