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Anyone experience multiple CMV resurgences post kidney transplant?
Transplants | Last Active: Dec 29, 2022 | Replies (107)Comment receiving replies
Good morning @caretakermom 😊
I am so happy to hear from you! It sounds like you met with an excellent transplant doctor. I am thrilled that he is acting proactively to avoid a resistant version of CMV.
I have seen many posts on Connect over the years with transplant patients successfully and happily on Sirolimus. (You can always post a discussion asking about patient experience with Sirolimus).
Don't be overly concerned about rejection while hubby is on Tacronlimis and Prednisone. The transplant doctor is not overly concerned during this period because Tacronlimis is a very powerful immune suppression, especially when it's married with Prednisone. I am currently on Tacronlimis with a low dose of Cellcept because I am fighting the BK virus. If they need to stop the Cellcept, I also will be on Tacronlimis and Prednisone. This is normal protocol for handling these opportunistic infections like CMV and BK and highly effective, so don't be overly concerned.
It sounds like they have an excellent plan and you only have one more "undetected" CMV test to start implementing it!
I am super happy to hear that your transplant doctor is changing the med "cocktail" to avoid these recurring CMV infections in the future. (I thought you may have to speak with an Infectious Disease doctor to get these recurring infections resolved), but your Transplant doctor was on it....I love it!! Please post when hubby starts his Sirolimus and let us know how he's doing. @caretakermom How are you holding up? Are you taking care of yourself too? ❤
Replies to "Good morning @caretakermom 😊 I am so happy to hear from you! It sounds like you..."
@hello1234, how are you doing with battling BK? How long have you been on low dose Cellcept? Do you anticipate on returning to your normal dose once BK is gone? I'd be happy if hubby stays on some Myfortic but he is completely off of it! And the doctor does NOT want to even put him on lower dosage!
In a previous post, you said it took you months to get over CMV? At that time did they also cut down on your meds?
This is not what I/we had expected with respect to CMV. Was told that CMV and BK are both treatable but didn't expect persistent CMV!!
I hope you're improving on your BK labs and are doing well.
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@hello1234, I've read posts regarding Sirolimus on this forum as well as facebook but have never come across one where the switch to it was due to recurrence CMV infections. I have googled to see that there have been medical publications about it though. Most people get over CMV the first/second time, and they don't get CMV infections almost as soon as they get off Valcyte! I consider hubby to be in a very peculiar situation and proceeding with caution. You can tell I sound very uncertain about the new path the doctor wants to explore. He is the professional so we of course will follow his advice but we, especially myself, are cautiously optimistic.
As with any new drug one must be careful of side effects because they are individualized. People are effected differently because each individual has different needs. The harmful side effects of Sirolimus mentioned by the doctor(mouth sore, high cholesterol, proteinura, lung damage, etc) don't paint a pretty picture and we are hoping for the best. Won't know if there are any major side effects until hubby tries the new medicine "cocktail" as you put it. So indeed I'm very worried. Not sure if you saw the timestamp of my previous response to you but it was done at about 2 or 3 am PST!!
Do you think it's unusual to have to have meet with transplant doctor again after 8 month checkup? Since hubby is doing week labs and in touch with Mayo regarding labs, I'm wondering why we have to meet with him again. I reached out to the nurse for clarifications. Hope to hear from her soon! At this time, no one from Mayo scheduling has called about the next appointment.