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

@rachel5239
Hi @caretakermom 🥰
I hope all is going well! I am pretty sure I remember that your wonderful hubby was changed to Everolimus. Rachel's doctor wants to change her to Everolimus too. What was hubby's experience with Everolimus, everything good? @caretakermom

@hello1234 it is very expensive and I can’t afford to spend that much on 1 drug. Not sure what will happen. It is expensive even on GoodRx. Thanks for trying to find some info for me.

@rachel5239
Hi Rachel, on the internet it mentions the possibility of a cheaper generic version of Everolimus, discount programs, and $0 patient assistance programs through the manufacturer, etc.
Don't give up on the drug because of price yet.
(Also, the experienced pharmacists at the Specialty Pharmacy are sometimes very helpful navigating the best prices for these expensive speciality meds).
PS. Also, maybe someone will see this discussion that takes Everolimus and can let us know the scoop.
Maybe start a new discussion on Everolimus so people will see the topic of Everolimus.

@hello1234 how do I start a new discussion?

@rachel5239 To start a new topic or discussion:
Click into the Mayo Connect "Transplant Support" Group and you will see an option to "start a new discussion".
Click on "start a new discussion". and you will be prompted for a subject line and then type your message.
Give it a try and let me know if you have any problems.

@rachel5239 Yes, I was switched from tacrolimus to everolimus in 2019 when first diagnosed with GYN cancer as well as with declining kidney function. Easy transition, it worked very well. Unfortunately the cancer progressed necessitating a large surgery with multiple complications.
It was determined that everolimus hinders surgical healing, so I was switched back to tacrolimus. After all healing was completed, I wanted to go back to everolimus however my insurance coverage had changed and the new plan does not cover everolimus. It served me well except for the interference with healing. Kidney numbers were back in range while on everolimus.

@cromme50 I also have stage 3 kidney disease. I am more worried about my kidneys than my transplant. We are retired and on Medicare and humana. Even with humana, i cannot afford the Everolimus. I am trying to find some help with the price. Thanks for the information.

Stage 3 for kidneys also, same age as you. As far as coverage for Everolimus, the choking point is not Medicare/whatever secondary you have - it is your choice of provider for Medicare part D which is the medication coverage. For better coverage you need a better plan which of course will cost you more monthly. Here is so general information from Medicare but then you need to shop around for plans. I believe you might be able to change plans by 12/31 but I am not sure - worth investigating. Like you I also use GoodRx frequently but they are still too expensive for Everolimus.
https://www.medicare.gov/health-drug-plans/part-d/basics/costs

Hi @hello1234 ,

I hope you had a wonderful Christmas and Happy New Year. Hope you are doing well!

I'm sorry for the belated response but things had been very hectic this Christmas and totally forgot. I have been worried because my hubby's creatinine level has gone up by about 0.2. Neph doesn't seem too concerned about it because he says hubby was at that level at one time(beginning of transplant 3 years ago). Not sure if the increase in creatinine might be due to him drinking more of the Sparkling Ice drinks and less water these past 3 months? He also had an MRI (with contrast) 2 days prior to lab and I thought the contrast may have affected creatinine but both neph and urologist(ordered MRI) said these 2nd generation contrasts are safe for kidney patients. At any rate, hubby has return to drinking mostly water now and we will see if that will help improve his creatinine level. ..
As far as the Everolimus medication, fortunately hubby hasn't had any bad episodes with it other than the beginning. He did get mouth sores but only once and his lipids did go up but has since stabilized. Also I recall him having some protein in the urine when he first started Everolimus(which is another side effect of Everolimus) but the next lab he was cleared - neph checks is periodically. Hubby takes Everolimus 0.75 mg BID so that's not really a big dose. I'm thinking a bigger dose may give more side effects i don't know - this is something you can discuss with your doctor. Mayo says his Ev trough level should be 4-7 and his Tac 3-5. So far he is able to maintain this trough levels without changes in dosage. So far his experience with Everolimus hasn't been bad. Recall the reason Mayo switched him to Everolimus was because Myfortic was too overly immunosuppressed and his CMV kept returning. Finally after almost a year since transplant they switched him to Everolimus but kept him on Tac.

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?