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Has anyone been prescribed Everlimus as an immunosuppressant med?

Posted by charlie5454s @charlie5454s, Sep 25 6:37am

I have never heard of this anti-rejection med before (but hearing good things about it), but I've been on Sirolimus (also known as Rapamune) for 20+ years post transplant and assume this drug (Everlimus) must be related, given the name and immune suppressant category. So my question is how come I've never heard about this nor has my transplant team ever mentioned it? Just wondering as I'd like to keep on keeping on with this kidney and if this is a newer or "better"...well just curious.

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hello1234 | @hello1234 | Sep 28 11:32am
In reply to @rachel5239 "@hello1234. They have never talked to me about changing meds. Right now I am on 5..." + (show)
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@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.

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@rachel5239 thanks so much for letting me know about your meds. I am taking 500mg bid Cellcept and 2.5mg Envarsus XR (Tacrolimis). I am a five year kidney transplant and my new kidney is doing well .
The skin cancers I am growing on my scalp really concern me. It feels like I get a scalp biopsy every other week. Luckily, I love my Dermatology Office.

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charlie5454s | @charlie5454s | Sep 28 9:46pm
In reply to @rachel5239 "@hello1234. They have never talked to me about changing meds. Right now I am on 5..." + (show)
Profile picture for rachel5239 @rachel5239

@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.

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@rachel5239 & @hello12345
I was on Cellcept for almost 18 years first 500mg. 2x daily, along with 5mg. Prednisone and 1mg. Sirolimus once a day (after alternating between 1mg. & 2mg. every other day). The long term use of Cellcept eventually was causing G.I. issues and even an embarrassing rectal prolapse which was surgically repaired 2 years ago. So I was switched to Mycofenylate 250mg. 2x daily. (spelling?) Still having issues and team considering increasing Prednisone and stopping the Mycophenylate. Frustrating that now, this many years post transplant, still having meds juggled around. I don't know if I mentioned it but my husband was my donor as my blood type is AB+ which is rare and a universal receptor so my O+ husband got out of giving me jewely or flowers as an anniversary gift that year and instead gave me a kidney.

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rachel5239 | @rachel5239 | Sep 29 9:55am

I went off imuran and started cellcept about 2 years ago. I haven't any problems with it yet. My blood tests 1 month my numbers were elevated and my tacrolimus level was too low. I took them again last Thursday and they were back to normal. Things go pretty smoothly and then you can hit a bump. I have my yearly checkup in about 3 weeks. Guess will see how that goes. By the way, my transplant was a liver from an autoimmune disease.

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hello1234 | @hello1234 | Sep 29 11:54am

Hi @charlie5454s and @rachel5239 🥰
I am so happy to meet you both! Your posts are super helpful and detailed.
Charlie, your story about your husband being your kidney donor is amazing!!! It sounds like he doesn't have to give you another
gift ever again (Smile).
Let's keep in touch on how things are going, especially after our blood work or annual checks. (My annual is in November).

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