Kidney Transplant: Does your creatinine bounce around?

Hello @hello1234 - I have a question, any idea why you are taking just 250mg of mycophenolate, was it reduced - what was the initial dose you started with
Thanks
in my understanding Mycophenolate it the key drug than can be adjusted for fighting infections + it is lot cheaper than Tacrolimus.. there's got to be a real good reason for reducing Mycophenolate to 250mg only...Thanks if you can share some insights.. Regards

Hi @l0lag0lag0b3 😊
Thanks for jumping in to the discussion! Here is my story regarding my current reduced dose of Mycophenolate....
When I was first transplanted I took the standard 1000mg bid of Mycophenolate. It gave me neutropenia, leukopenia and high liver enzymes. I continued on the 1000mg bid until I got sick.
On month eight, I became sick with active CMV. My Mycophenolate was then reduced to 500mg bid and Valcyte was added.
My CMV cleared in 6 weeks.
At my 2 year anniversary in August, I was diagnosed with BK virus so my Mycophenolate was reduced again, now to 250mg bid.
I still have BK virus and my Mycophenolate is 250mg bid in an attempt to clear the BK.
It's not easy to find the perfect med "cocktail" to avoid these opportunistic infections and also avoid rejection.
Have you had any challenges with infection or with your creatinine levels?

Hello @hello1234,
Thanks for sharing, you have been thru' a lot, I am sure you will overcome this BK episode too. So far so good no infections, creatinine has been stable over 1 & 1/2 year Gfr is in mid 70s, both of us are super careful on diet, still wear a mask . My biggest challenge is PTE secondary that is work in progress...

@l0lag0lag0b3 😊
I am very happy to hear that your post kidney transplant experience has been infection free and your GFR is doing great! Are you planning on removing your native kidneys to help with the PTE or are there alternative solutions?

Thanks hello1234 , I have recently changed my regular Transplant Nephrologist (to whom I am grateful for accepting me) - The new Dr has been more forthcoming . I will fill you as time advances.

@l0lag0lag0b3
Sounds wonderful! Is your new doctor at your transplant center or is he your local nephrologist?

The new Dr is from the local Transplant Center.

Hi @l0lag0lag0b3 😊
It's wondeeful that you have a local transplant center near your home. I was transplanted at Mayo, about 4 hours away. Cleveland Clinic has a transplant center only an hour away from my house. I wonder if I should call to see if it's possible to get an appointment with a transplant nephrologist there to use as my local nephrologist. Is that what you did?
(Also, when you can please share some of the things that you are learning from your new transplant nephrologist. I love to hear your comments like "more forthcoming" since it makes me think of a thoughtful and knowledgeable doctor that treats you like family). 😊

Hello @hello1234, as you many know - I had my kidney transplant out of state, when we came back home, it was a nightmare scenario to find a Doctor , Went to a Doctor who claimed to be a Transplant Nephrologist, right on the first encounter - Dr mentions you need to upgrade Acyclovir to Ganciclovir. That raised an alarm in my mind -why because The transplant center had mentioned STOP Acyclovir after 90 days and besides my viral copies were miniscule , And I go home and find that Ganciclovir is administered when Copies exceed 10000. At that point I just took it on myself to STOP going to this Dr # 1. Now there is bigger panic to find another Dr - spoke to my pre transplant Nephrologist - who found me an interim Dr # 2 who for the first year was good ( Dr # 2 too wanted me to continue Acyclovir past 90 days - I told him - i had to stop it as per my Transplant center after 90 days - his facial expressions led to me to believe he did not like it. but I had to stop it as per guidelines from transplant center.
I hung around with him, but after 1 year there was lack of interest .. as per protocol the Dr did not do annual BKV/CMV tests granted that my Gfr was ok ( I was still getting furious internally... thats me ) but I had to live with this Dr.. but my search for a new Doctor had started in my mind - Finally I got a appointment with a new Dr ..I had been wanting to see this Doctor from day 1 .. done fellowship in transplant nephrology and relatively young .. (previous Dr to me he could retire at anytime due to age factor, I have to go a Dr who is going to outlive me as I am a senior .. That is my story. So I would suggest it is always better to go to a Kidney Transplant Nephrologist affiliated with a transplant center... as they are more experienced and have a good idea on the national level as to how to deal with odd situations. Btw we have to drive a hour to the new Doctor.. that is ok with both of us.

Hi @l0lag0lag0b3 😊
I can't believe how similar all of our experiences are. I really appreciate hearing your story.... You have no idea how much!
I sometimes get mentally and physically exhausted trying to advocate for the proper care. It frightens me and makes me feel insecure.
I have learned how difficult it is to get consensus on the correct treatment for these different viruses. Which virus was your Acyclovir treating?
I took Valcyte for the CMV and now I have reduced immune suppression for my current BK virus. My Allosure and creatinine blood tests are both showing an increase which makes me nervous.
I really like your idea of finding a local transplant nephrologist that specializes in transplant.