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

Thank you so much for LLC this great information @rachel5239 and @m1rmiller 😀 My dermatologist gave me Fluorouracil solution that's a liquid solution with a dropper. I think it's tough to make sure I am covering my head completely. Maybe I should ask for the Fluorouracil cream. Was the cream pretty easy to apply to your scalp m1rmiller?

@rachel5239 the whole lip thing sounds like an awful experience. (I agree about the mask!). Also, did your doctor adjust your low dosage of TAC to get you back in range? I am hopeful that your annual visit numbers are back in line and no further med adjustments are needed. Please keep me posted.

@hello1234 they did not change my dose. My kidneys aren’t the best either. Stage 3 kidney disease. It has been at that stage for many years. I will find out more next week.

Thank you so much for LLC this great information @rachel5239 and @m1rmiller 😀 My dermatologist gave me Fluorouracil solution that's a liquid solution with a dropper. I think it's tough to make sure I am covering my head completely. Maybe I should ask for the Fluorouracil cream. Was the cream pretty easy to apply to your scalp m1rmiller?

@rachel5239 the whole lip thing sounds like an awful experience. (I agree about the mask!). Also, did your doctor adjust your low dosage of TAC to get you back in range? I am hopeful that your annual visit numbers are back in line and no further med adjustments are needed. Please keep me posted.

@hello1234 Yes- no problem applying it. But I should add that I have pattern baldness so that made it pretty easy to just smear it on with my fingers. If you have a nice full head of hair it might be an entirely different experience.

@rachel5239 Please keep me posted on how you make out at your annual. (I am happy to hear that your kidney function has been stable). Thank you again for all your wonderful information and support!

@hello1234 I had my appointments yesterday and they went pretty good. I had 2 more biopsies ugh. They were satisfied with my test results. I have always had low blood pressure. In the last months it has gotten pretty high. High blood pressure can be very hard on kidneys. They said they will make an appointment with nephrology. I received a message today and they can’t get me in for almost 3 months. I am not very happy about that. Sent a message to my primary care giver and asked him if he can get me an earlier appointment at Mayo in Lacrosse, WI. I also need to have something that showed up on my mammogram looked at. Now that has never happened before. Guess I just have to roll with the punches.

Hi @rachel5239
I am happy to hear your appointment went pretty well. It seems every appointment involves two or three biopsies for me too. Tell me about your high blood pressure. How high? You sound like me. When I was younger and before my transplant and immune suppression meds, my blood pressure was always on the low side. Lately, my pressure is high. I think some of my high blood pressure is from gaining about 10 pounds of necessary weight, too much stress, and not enough exercise. I need to commit to making a few changes in my diet, exercise and stress management. Are you having the same issues or do you think you will need a BP medication to bring it down? I guess it depends how high your pressure is getting?

@hello1234 my blood pressure has always been around 110 over low 70s. This just changed a few months ago. Yes they want me to start a low dose of blood pressure medicine. Just wondering, how far out from transplant are you? I turned 74 yesterday so my age probably has something to do with it. Are you the one that is 35 years post transplant? When I had mine I had 2 sons, one was 12 and the other one was 8. My only prayer was to live long enough so they could graduate from high school and start their own lives. Now they are both grandfathers. I am so thankful that I was given all the time I have had so far. I have been truly blessed. Blessings to you also.

Hi @rachel5239 I am celebrating my FIVE year kidney transplant anniversary this year! I am 65 years old. As a younger, thinner person, my blood pressure was always around 110 over 75 too. Now my blood pressure is 119 over 85 with 2.5mg Amlodipine every night. 85 is still too high for a kidney transplant patient. When I tried 5mg Amlodipine, it occasionally went too low and I didn't feel well. I am going to try to lose 10 pounds to see what that does. Are you going to start taking Amlodipine or something else?
Congratulations on your very blessed life! I feel the same way too. I am. very in touch with the fact that without the latest advanced medical
technology, I wouldn't be here
to enjoy my life.
I am very thankful to be able to worry about squamous and high blood pressure. Lol

@hello1234 Just curious- who told you that a systolic of 85 was too high for a 65 year old transplant patient? Was it a nephrologist?