Switching CellCept (mycophenolate mofetil) for Sirolimus (rapamycin)?

Hi @caretakermom 🥰
Happy New Year to you and hubby!! I was getting a little worried when I didn't hear from you, so I am happy to hear that you were busy with Christmas errands.
Sorry to hear about the worry part. I am surprised to hear that hubby had a slight increase in creatinine, but .2 can be caused by something very minor like hydration or a temporary blip caused by the contrast. I forget what is his normal creatinine baseline?
Did hubby hydrate and retest the following week? He should definitely retest before you both get overly concerned.
Also, does hubby standardize the amount of water he drinks before his blood tests?
I realized my numbers were jumping around a little too, so now I drink the same amount of bottled water one hour before my blood tests every time I go.
It has really helped to stabilize the blood results. I highly recommend it! Does hubby test every month or every 3 months now?

Hi @hello1234 ,

Hubby gets labs done every month so he retested the following month with the same creatinine result. His normal creatinine baseline is about 1.17 (i know this is still considered high because some people have less than 1), creatinine was higher right after transplant but slowly dropped over time. Now it is about 0.2 higher so I'm hopping drinking more water may improve. I will take your advice and ask hubby to drink water before going into lab. His lab is usually first thing in the a m with fasting so he doesn't take in anything prior to blood draw. Starting in 2026, I was going to have him go in labs monthly just to do the trough levels but now I'd like for him to also do the CMP - would like to see trend in creatinine.
What about you? How often do you get labs drawn? Neph was telling us hubby can just do it every 3 months.

Hi @hello1234 ,

Hubby gets labs done every month so he retested the following month with the same creatinine result. His normal creatinine baseline is about 1.17 (i know this is still considered high because some people have less than 1), creatinine was higher right after transplant but slowly dropped over time. Now it is about 0.2 higher so I'm hopping drinking more water may improve. I will take your advice and ask hubby to drink water before going into lab. His lab is usually first thing in the a m with fasting so he doesn't take in anything prior to blood draw. Starting in 2026, I was going to have him go in labs monthly just to do the trough levels but now I'd like for him to also do the CMP - would like to see trend in creatinine.
What about you? How often do you get labs drawn? Neph was telling us hubby can just do it every 3 months.

I am 2 months short of 3 years post kidney transplant. After transplant we started on Mycophenalate and Tacrolimus. after a few months they dropped the Mycophenalate and it was just Tacrolimus. After about a year I was started on full body exams with a dermatologist every 3 months. The very first exam had 3 biopsies and one of them turned out to be a malignant melanoma. I was switched from Tacrolimus to Sirolimus and Prednisone and had the melanoma surgically removed. There was no residual after the surgery and we have not found any more since. I did go through a pretty severe bout of actinic keratosis on my head which we cleared up with a topical cream that brought up lots of lessions which all disappeared after a month or so. No significant side effect with the switch to Sirolimus. I have also read that there are some who use Sirolimus off label as it alleged to encourage living longer.

Hi @m1rmiller 🥰
It's so nice to hear from you! I am having the same problem with a serious bout of actinic keratosis on my scalp right now. Did you use EFUDEX or Fluorouracil solution or something else to get rid of it? Do you remember how long you had to use the topical cream to get rid of the AK?
Thank you so much for this posting. It came into my inbox at the perfect time!

@hello1234 Hi- I used Fluoricil. They are actually the same thingjust one ia a generic and the other is a brand name. At my age my memory isn't what it used to be, but I think it pretty much cleared up in 2 weeks but was more like a month to really completely vanish. But be warned that the first thing that happened to me was that it got much worse. Not in severity but what was just a few spots spread all over my head when I applied the cream all over. I was prescribed the cream not the liquid and I'm not sure what's the difference is. I was working with a dermatologist whom I trusted to know what to do and she did. None of it was all that bad, just mildly uncomfortable and a bit annoying for a couple of weeks but i you've had CKD for a while you are used to it I'm sure.. Nothing to be afraid of as far as I'm concerned. You can handle this one.

@m1rmiller
You are awesome! This is very, very helpful information. Especially the heads up about getting worse before it gets better!!
It turns out that my dermatologist wrote for the Fluorouracil solution in a dropper today. Apply twice a day. Hopefully the solution formula is as effective as the cream was for you.
Thank you again for sharing all of this great first hand experience 😊 Very helpful and very much appreciated!!

@hello1234 Keep us posted on your progress