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Switched from Tacrolimus to Belatacept
Hi all. I'm just shy of my one year kidney transplant anniversary. At my four month appointment I asked my doctor if I'd be a candidate to switch from Tacrolimus to Belatacept (I'd done the research and knew that I was). The reason I asked was because despite Tacrolimus being the "gold standard" (combined with Mycophenolate Mofetil) for anti-rejection medications, it comes with side effects. Mine included significant GI issues, hair loss and steadily increasing blood glucose levels. Also, I was concerned with the nephrotoxic effects of the drug (ever notice that as your dosage goes up, your creatinine goes up as well?).
I started the Belatacept infusions at the beginning of July and am loving the change. My hair stopped falling out and started growing back. My blood glucose levels returned to normal. My GI issues are gone. But more importantly, I saw an 0.24 decrease in my creatinine levels and an 11 point increase in my eGFR.
Everyone's experience is different but check it out with your doctor if you're interested in learning more. I'm only 56 so I want to keep this kidney has healthy as possible for as long as possible.
Take care.
Vicki
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@caretakermom
We had the occasion to stop by the Infusion center in Mayo Phx last week (8/5/26 or so) and talked to some of the infusion nurses and it doesn't sound like there is any shortage of kidney transplant patients on Belatacept here. We wonder is the problem is they already have more than they want? They compound the drug in the pharmacy in Mayo phx.
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1 Reaction@geomusser
It's a good thing that your wife's nephrologist did not outright reject the option to do Bela. Did she go over what are the criteria are to use Bela? Is this the same nephrologist you wife has had since transplant? We are from out-of-state so we have a home/local nephrologist who is working with Mayo to resolve my husband's issue with Everolimus(we think it's the drug that's causing his anemia). You are fortunate to be able to meet directly with the transplant nephrologist! We were told after 3 years post transplant, we're pretty much "on our own" - we do not have anymore follow-ups with Mayo Az.
With regards to Everolimus, the most common side affects are anemia, hyperlipidemia, mouth sores, edema, and proteinuria. I have not heard that high blood pressure is one of its side effects. My husband had mild edema - he can live with that but he cannot live with the anemia, which in his case is bordering on severe if left unchecked. So at the moment, he has been told by his home nephrologist to pause the Everolimus and take the dreaded prednisone instead. We are waiting for my husband to recover from the anemia before any changes be made to his long-term transplant medication.
@geomusser This is the link I saw, but could not find a date or results. Study may be ongoing.
https://www.mayo.edu/research/clinical-trials/cls-20318351
I am so sorry you are going through this.
@benedict66066 Hi Benedict;
I emailed Dr. Khamash to see what the status is and if there are draft results or some kind of a working summary those of us outside of Mayo staff are allowed to review. In the mean time I found a study at NIH that addresses conversion from Tacrolimus to Belatacept (a randomized phase 3 trial). I am not sure what numbers I can give anyone to find it but ISSN: 1533-3450/1046-3252 or maybe JASN 32-3252-3264, 2021. It was accepted October 7, 2021.
I don't see any surprises in it but they did see improving GFR over time but did not see blood pressure improvements. I did not see any discussion on anemia.
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1 Reaction@caretakermom
Hi Mom
It seems like anemia is a very common side effect with all these immuno supressant drugs. My wife has had problems with it off and on over the years. So far this year she has had 2 Ferritin infusions and I can't even tell you how many shots of Aranesp (or something similar) 5 ish.
Anything more you can tell me about Everolimus? It sounds like that will be her Nephrologist's choice. How long has your husband been taking it? Does he take CellCept and/or Prednisone with it? My wife has some edema nor but it is every likely caused by the Hydralazine she is taking (for reasons I can't begin to understand). She is also taking 25 mg of Carvedilol twice a day and seems to tolerate that very well. But that is pretty new to her as she started it after she came out of the hospital about a month ago.
Thanks again for your help and best of luck with the anemia. It's always a struggle but it looks like we are in it together.
Hi again Everyone;
In my earlier post I forgot to ask if anyone has any experience with Urea and/or Samsca (or any of the generic equivalents. My wife's sodium is constantly low and we need to somehow need to avoid more trips to Mayo with dangerously low sodium.
Thanks again for your help.
G
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1 Reaction@geomusser
Hi @geomusser ,
I can tell you that our UCLA hematologist/oncologist has a lot of cancer patients on Everolimus though the dose they take are much higher than the transplant patients, he says he has seen many such cases of anemia. He is not happy that my husband is on this drug.
Hematologist is running all sorts of blood tests to test if it could be some other contributing factors. We are waiting for the bone marrow biospsy results to see what it shows - would should Parvovirus B19 infection if present, which can be the cause of anemia. So our home neph ordered Parvovirus B19 PCR and tested negative. UCLA hematologist also ordered PCR(did igG, and igM) and again it's negative but the bone marrow biopsy results will give the definitive result. It's a mystery to me that that such small dose of Everolimus - i mean small, can cause such havoc in one's body. That tells you that one size DOES NOT fits ala
Hubby has been on Everolimus for a little over 3.5 years along with Tacrolimus, no prednisone. He could not take CellCept because it caused digestive issues. Mayo Az changed it to Myfortic but he kept getting CMV recurrence, because over-immuned. Finally they switched to Everolimus in Nov 2022. Hubby's labs were looking good up until this March, when he had to increase dose to meet trough range. That's when his CBC/anemia developed I believe. The small increase dose caused mayhem in his CBC labs, his ferratin/vitamin is fine. I hope the hematologist will give an ESA shot to him at next office visit. He is temporarily off Everolimus(replaced with prednisone) until he recovers from anemia. His home/neph(with consultation with Mayo Az) will then decide how to move forward. I'm hoping they'll allow him to stay with Everolimus but target a lower trough range but that'll be up to the Mayo Az transplant team. Not sure at this point what other drugs he can take in place of Everolimus.
Are you sure your wife is take 25mg, and not 2.5 mg, of Carvedilol?? My husband takes 6.25mg carvedilol BID.
@caretakermom
Hi Caretakermom
It sounds like you in the endless struggle too. So sorry to hear you can't even get a diagnosis for your husband. We are painfully aware of the anguish that accompanies that situation.
Sadly she actually is on 25 mg twice a day and her blood pressure is still up this morning. Her cardiologist wanted to double it to what he believes is the maximum dose but her nephrologist pulled the plug on that. She has been taking Hydralazine as well but it adds edema to her problems (discomfort). Not really sure where we should go from here but if I was a betting man I would put my dollar on back to the hospital but she has become extremely resistant to going back.
Can you give me a number on the smallest dose he was on with Everolimus for a sustained period. It always helps to have some idea where she could realistically start. Her nephrologist is very cautions and always seems to err on the side of over protection of the transplant (and we all know how well that has worked with tacrolimus - my wife has seen troth level spikes as high as 40 - which no one in the ER could even believe). So when your husband was doing the best when he was just on Everolimus (doese?) (no CellCept, no Prednisone), is that correct? Her struggle with anemia is also very frustrating. My dad had small call lung cancer and he really felt a lot better for a week of two when he got Procrit injections. My wife doesn't seem to even notice any benefit.
Best of luck with the biopsy results. When you actually have a treatment plan and clear goals life always seems so much better.
G
@geomusser
Geomusser,
The dose is going to be customized to each patient. The lowest Everolimus dose that worked for hubby for the last 3.5 years was 0.75 mg, BID. He was/is also taking Tacrolimus but a smaller dose than standard, trough range 3-5. No prednisone. But this past March the home neph said to increase dose because hubby was NOT hitting trough range, 4-7. Again, this trough range is specific to each patient. The increase was by 0.25mg increments(the smallest increment) and to hit his trough range he had to take 1.25 mg am, and 1.0 mg pm. This change in dose caused gradual anemia over a period of 4 months. To the point of losing 30% blood(compared to the previous labs)!! Had to have a blood infusion end of July.
Our hematologist/oncologist ran all sorts of blood tests, did "flow cytometry" to check for luekemia and lymphoma and both came back negative. The blood tests show no hemolysis and labs are consistent with bone marrow suppression(presumably by Everolimus). Checked for possible virus such as Parvo Virs B19 and CMV - negative. Recently did another CBC lab - counts look better because hubby now paused Everolimus. But we have to wait for the bone marrow biopsy results to see what it shows. I think the Procrit/Epogen shot should help hubby's anemia now that he is off Everolimus. His hemoglobin improved but is in the 9's - still low. It can take months to recover - he only paused Everolimus 2 weeks ago. Will ask for ESA shot at next office visit with hematologist.
May I ask who is the Mayo Az nephrologist you saw? We like Dr Mour. Is he still there?