Has anyone been prescribed Everlimus as an immunosuppressant med?

I also just heard about this drug. My doctors have never mentioned it. I am 38 years post liver transplant and my numbers are spiking some. I just took blood tests yesterday so I will soon find out what is happening. They keep pushing imuran. I took that drug when I was 16 years old. I would think there would have better drugs by now.

Yes, I took it for 2 years. Liver transplant in 1998, GYN cancer in 2018 plus marginal kidney numbers were the reason to switch me to Everolimus. No issues came from it but in 2020 I had pelvic surgery for the GYN cancer and by then it had become known that Everolimus significantly slows down healing which was problematic after the massive surgery in 2020. For that reason I was switched back to Tacrolimus. I tried to switch back to Everolimus last year to help the kidneys, by then the manufacturer of Everolimus was no longer offering it free through their Foundation. Mayo is willing to prescribe it but I cannot afford it.

Of significance - a transplant doc used an interesting analogy to explain that Tacrolimus is very quickly respondent to dose changes and it is easy to measure the levels in our blood with testing, change dosage, test again until being in a safe zone. The analogy was Tacrolimus is like a nervous sports car with quick reactions to action while Everolimus is like driving a school bus, slow to respond to dosage changes.
I believe that explains the reluctance to prescribe, especially in the first 5 years or if there are co-morbidities or something in the patient needs healing.

@cromme50
Have you ever tried Goodrx. I looked up Everolimus and it is on there. Since I don't know your dose or how much you take, I couldn't look up a price. I get all of my transplant drugs from Goodrx. My tacrolimus is under $50. For a 3 month supply.

Question: why do you have to pay for your immunosuppressant meds? At one tine, yes, they were covered for only the first 3 years (which truly makes no sense as we need these drugs for our survival.) But now they are covered indefinitely....unfortunately not the meds one must take to.counter the side effects of the anti-rejection meds. (e,g. One of mine raises cholesterol and must take Lipitor (luckily I have good insurance)
But back to my original guestion...glad I'm not the only one who is wondering about Everlimus. I've taken Sirolimus since my transplant in 2005. Long term I developed AVN and have 2 titanium hips, a knee and a humerus (which wasn't humorous), but truly to keep this kidney, what's a little metal in the scheme of things?

@rachel5239
Yes, I am a big fan of GoodRx. The required dosage for me was 0.5 mg twice a day taking 3 pills.
If you do the math, that is 6 pills a day or 540 pills for 90 days. My insurance did not cover it but I was approved by the manufacturer's foundation and got the medication free. After my healing issue was resolved and I tried to get back on Everolimus., the foundation had discontinued that program. BTW, back then in 2021 there was no generic for this, the name brand was Zortress. Today's price at GoodRx for 540 pills for 90 days are $12,131 for the name brand and $2,738 for generic. Like you, I get the tacrolimus through GoodRx because their price is better than my Medicare part D.

@charlie5454s
I believe the free 3 years applied only to kidney transplant, no other organ. Am I wrong? I agree it does not make any sense! I had to pay for immunosuppressant drugs from day 1 of the liver transplant 27 years ago. I have been on Medicare for the last 10 years, so my medications are managed by the plan on Part D. My cost is whatever Humana/Centerwell deems to be the price but I always do like Rachel5239 and look up GoodRx to compare prices and use what is best. I have checked other outfits like Mark Cuban Cost Plus and Single Care and found that GoodRx is really the only option that is consistent and requires the least amount of personal information. I am sorry to hear you have AVN - bummer! None of us on long term immuno suppressants come out unscathed, I got cancer and marginal kidneys from it - but....I am still alive with good quality of life.

Charlie5454. Glad to hear you are 27 years post transplant. I am 38 years out and it has been quite the journey. Still doing ok though. Lots of problems with skin cancers but only squamous or basil cell. Easy to get rid of if you get it checked. I always say if it is new and tender, get it checked. Happy it hasn’t been anything more serious.

Hi @rachel5239 that is excellent advice about "new and tender" to find the skin cancers. I have had several MOHS surgeries for squamous and basal on my scalp and face. I currently take Envarsus XR (Tacrolimis) and Cellcept. Did you ever change to Sirolimus instead of Tacrolimis? I am contemplating the idea to see if it slows down the skin cancers.

@hello1234. They have never talked to me about changing meds. Right now I am on 5 mg of prednisone, Tacrolimus .5mg 2x a day and 500 mg of cellcept 2x a day. By the way, how are your kidneys? I have been at stage 3 for several years. Lowering my dose of Tacrolimus helped.