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Switched from Tacrolimus to Belatacept

Posted by 2gallonhabit @2gallonhabit, Nov 20, 2023

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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geomusser | @geomusser | 1 hour ago
In reply to @caretakermom "@geomusser Geomusser, The dose is going to be customized to each patient. The lowest Everolimus dose..." + (show)
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@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?

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@caretakermom

Hi Caretakermom;

Now we generally see Dr. Nica as an outpatient at Mayo Phx (but she does not do rounds when you are in the hospital). The last time my wife was in the hospital about 6 weeks ago it was like playing craps. Every day a different Nephrologist came in and every time they (provided no diagnosis) but were more than happy to recommend a drug or something (and they never followed up to see if it worked). Very disappointing to see a different Nephrologist every day in my opinion. We have both seen Dr Mour in the past and nothing personal but he was far from our favorite (not sure if he is still there). We did see Dr. Nair a couple of times on the last trip (she runs the kidney transplant section now (at the medical school - i think) so she was always with students). We worked with her 6 or so years ago when my wife had a virus they could not get rid of. The second time I took her back to the hospital (for the same virus) the only Nephrologist we saw was Dr. Nair who quickly figured it all out. As far as we are concerned she is far in a way the best (perhaps in the world). Ask anything and she has answers, can tell you where they came from and why (a question that always gets me in trouble with nearly all the others). Sadly with her other work (Teaching) I don't think she is involved that much with patients but at least we can all hope that the Nephrologists get together for their patient discussions (Thursdays?), so they have the brain power (there somewhere) no matter who you see? If you need other names I will go back over the hospital list and try to get a couple of the better ones.

Interestingly with my wife's GI surgery (also @ Mayo Phx) she saw the same surgeon and her assistant Dr. throughout the process. Dr. Young Fadah and her entire team were great. There were issues with scar tissue and the surgery ended up taking an extra hour, but they stepped right up and got it done. One of them was there on rounds every day my wife was in the hospital. My wife got a call from their team on some follow up work Friday (almost 2 months after the surgery). Dr. Young is absolutely the best we would recommend her without qualifiers. Before the surgery we were reviewing some online books on the surgery and Dr. Young had written several of them.

It looks like my wife is sentenced to Tacrolimus to the end as her GFR is <20 and there seem to be issues with all the other choices that make them more problematic. The good news is we seem to have gotten her blood pressure stabilized with Nifedipine LA and Carvedilol. Unfortunately she is seeing substantial swelling in her feet and legs but not much worse that she had with Hydralazine. Her blood pressure had been so high (165/80 on a good day) (even with a high dose of Carvedilol and Hydralazine) that we had to do something different.

If anyone has experience with this edema induced by drugs and has any suggestions we would really appreciate them. She takes water pills, does the compression sox, elevates her feet, ... but nothing really seems to help. We see advertisements everywhere for some "genius" invention that slips on your feet - provides heat and paulsing but is sounds like another "to good to be true" gimmick (but we are game if anyone can recommend them)?

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