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Switched from Tacrolimus to Belatacept
Transplants | Last Active: 1 day ago | Replies (77)Comment receiving replies
My husband received his kidney txplant at Mayo Clinic Az in March 2022, at 62 years old. When I asked the txplant coordinator about Belatacept (during the first year post txplant), she said that it can cause brain damage - she did not elaborate. That was the first time I ever heard anything bad about it because online the it was all positive comments..
At the time, I was quite active in reading online posts about alternatives to the usual transplant meds. Like you, I have heard that these meds can cause nephrotoxicity over time. All of the online feebacks regarding Belatcept were positive and so I was very surprised about the nurse's comment.
My husband recently developed a severe case of anemia and we think the culprit is one of his transplant meds(Everolimus). Hematologist/oncologist ran tests howing no hemolysis, all labs consistent with bone marrow suppression. Mayo Az said to get a bone marrow biopsy to show it's working well ()this will point to the Everolimus as the cause of the anemia).
We have a local/home neph and Mayo Az txplant center is out-of-state. We are working with home neph who is in actual contact with the Mayo Az txplant team. We are not sure if they're going to restart Everolimus, once anemia is recovered, or change of medication. If the latter, not sure what to change to because he has already tried Mycophenolate/Myfortic during the first year - did not work because too overly suppressive causing CMV reccurence. Everolimus worked well until this past March when dose had to be increased to meet trough range. So I'm thinking of asking if Belatacept could be an option. I have not done any "research" regarding whether my husband would be a good candidate but would willing to try anything to save his graft.
There is also the question of whether insurance would cover Belatacept which is an expensive therapy(so is Everolims compaared to the other ones). We have Anthem PPO commerical/employer health insurance because husband is still working full-time.
Questions:
How long did it take for your insurance to approve it? Do you have to get prior authorization once a month when you get your infusion? Do you get your infusion at the transplant center?
Replies to "@2gallonhabit My husband received his kidney txplant at Mayo Clinic Az in March 2022, at 62..."
@caretakermom
Hi Caretakermon
I expect that there is a lot about all this that Mayo is not telling us. I am a kidney donor and a caretaker as well. My wife got a transplant July 11, 2018 and has been up and down ever since (in all fairness much more up than down). She has been on the standard Tacrolimus, CellCept and prednisone all 8 years and has had issues. She has been losing sodium for years. She has been hospitalized numerous times with critically low sodium and they keep putting her in the SIADH basket, which has not seemed helpful for her. Limiting water intake does keep her from losing sodium but it also causes large spikes in Tacrolimus, potassium and many other things. Her lab work is pretty much laughable (if it wasn't so sad) almost every value is marker as "outside the range".
Now it seems that we have reached a turning point as she has something like 30% scarring of her kidney (likely from Tacrolimus - but no one at Mayo will admit that). Her GFR bounces between 20 some odd and less than 15 depending on the day and her level of compliance with their 1.5 L water restriction and she is still seeing substantial leg swelling late in the day. We are meeting with her Nephrologist at Mayo again next week and are hoping that we can get her onboard for the transition to Belatacept but it's kind of like jumping out of a plane for us. We have been asking about a change of medication for years, but her doctor has been strongly resistant for reasons we don't understand (and she can't explain).
Does anyone know why the Mayo staff is so reluctant to change patients to Belatacept? We understood there was a supposedly shortage of Belatacept during COVID but now I hear it is compounded at Mayo in Phoenix. Since the Mayo Specialty Pharmacy in Rochester no longer handles the standard trio (Tacro, CellCept, and pred) does that mean that Mayo is "transitioning" too? It's a real puzzle to us. The stories of how well so many are doing on Bellacept is encouraging but I am afraid the transition at this point will be very risky.
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@caretakermom Thanks for the info - sounds like a "rare" side effect per drug.com - https://www.drugs.com/sfx/belatacept-side-effects.html - but still real concern. Obviously I'm not a doctor but I believe that since your husband is CMV positive, the Belatacept approval *may* be more difficult. If I remember correctly, the studies focused on Epstein-Barr positive / CMV negative patients (also I think BK virus negative as well?). I believe I read that our immunosuppressed status makes it more risky as CMV and BK may move from dormant to active status.
As for prior authorization, I don't believe there was much of an issue (I was on UHC commercial insurance at the time). My infusion center - Palmetto Infusions (I think they're mainly East Coast/Southern, but growing) took care of all the paperwork and approvals. My understanding is that it goes under your medical benefits, not your drug plan, since it requires you to go to a facility. There's also a manufacturer's discount program that can help with out of pocket.
Oh. Since I had moved from Minnesota to Florida after my transplant, the transplant center gave me the option of a couple of locations near me so I just chose one and got started.