General
LOSS OF MEMORY
February 23, 2022
in General
WITHIN THE PAST YEAR, I'VE NOTICED A LOSS OF MEMORY IN MYSELF. (NO ONE IN MY FAMILY HAS HAD A LOSS OF MEMORY AS THEY GOT OLDER.)
HAVING BEEN AN INVESTIGATIVE REPORTER, I BEGAN DOING SOME RESEARCH. I WAS MOST INTERESTED IN KNOWING IF ANY OF MY TRANSPLANT MEDICATIONS. TO MY SURPRISE, I FOUND INFORMATION THAT INDICATED A LOSS OF MEMORY HAD BEEN NOTED AS A SIDE EFFECT AMONG TRANSPLANT PATIENTS USING PROGRAF. SINCE THEN I'VE SWITCHED ANTI-REJECTION DRUGS FROM PROGRAF OR (TACROLIMUS) TO SIROLIMUS. I'VE BEEN ON IT FOR ABOUT SIX MONTHS AND SEEMS TO HAVE MADE A DIFFERENCE IN MY ABILITY TO REMEMBER. MY PURPOSE IN BRINGING THIS UP IS TO SEE IF ANYONE ELSE MAY HAVE HAD THE SAME SIDE EFFECT. LET ME KNOW.
1 - 16 of 16 Replies
In the year an a half since my kidney transplant I have noticed a significant change in being able to focus on day to day activities. I know that the medications I am on have many side effects and I have experienced most but i never made the connection between prograf and memory. Will definitely discuss with my nephrologist. Thank you for making me aware.
I'm so glad to hear I'm not the only one. Before my liver transplant I had a good memory. But I'm 7 months out and I seriously can't remember anything now I have to keep writing my passwords down. And I really got worried because I'm only 27 and I have such bad memory. Driving down the road I sometimes forget where I was going .
It has been over three years for my Liver transplant. I am now 71 and had no issues with memory
Transplant Patient
I have memory issues post transplant. My niece came over last week and I had to ask my husband if she was born before or after my transplant (which when I realized how old she was it was clearly after but I don’t remember her being born). A lot of dates and things i did/said are jumbled from pre-transplant and just post transplant. And now I’ll often forget what I’m saying mid sentence or forget to do something. I attribute it to my tacrolimus and the intense trauma my body went through during surgery
I am coming up on three years post transplant. I have been wondering if I am starting to to have early onset Alzheimer’s.
I cannot remember many details, names words while speaking. My concentration for any length of time is difficult. I have written this off to COVID and being locked up.
I am relieved to hear others are having similar issues. Thanks.
I too have some memory lost but not as bad as some if you have mentioned. I forget names, dates and why I walk into rooms. I think the last one is common but I never thought about my meds causing it. I’ve been told being under anesthesia multiple times and for long periods of time can cause memory loss. Never researched it myself but now I might. Now I’m curious.
I have experienced memory loss post transplant as well but it was little things so I never worried about it. I also was told it was from being under anesthesia multiple times and for long periods of time like @deb mentioned. I never really consider it could be my medicine.
Transplant Patient
This thread is soooo important to what we are working on - we must push science further and also the companies out there to launch more programs to offer alternatives to Tacrolimus!! It does have serious side effects and cognitive dysfunction is one major one.
Yes, I agree. It's still Tacro, but I switched to Envarsus and have fewer neurological symptoms. I was having bad hand tremors and headaches, along with brain fog. They are all much better with Envarsus, but I do still have the brain fog. The word finding is the worst for me. 😂 It's like a guessing game at night for me and the kids because I can't remember the words for anything when I'm tired.
Transplant Patient
@Shelbycreates i’m starting a clinical trial involving envarsus soon! Really hoping it will be beneficial for me (the trial is for dealing with my bile duct and graft complications but if it takes any of my symptoms away I’ll take it)
I hope that it goes well for you. Envarsus answered so many of the problems I was having with tacro. Plus, it's super nice to only have to take meds once a day (I feel very lucky).
Is anyone here a heart transplant and using or planning to use Envarsus? Thanks.
Bruce
Meant to say heart transplant patient.
Bruce
Hi Bruce, I am also on Prograf(30 years, 1993) and have the same memory + language issues for over 3 years now. I was on 2mg in the morning and 1 mg at night, they just increased my dosage to 2mg and 2mg. My A1C SKYROCKED from 5.9 to 8.0. My Dr. wont reduce the Prograft, she wont even respond to me or give me an explanation why, the last thing I want is DIABEATES.
It took me time to realize all the side effect im going thru, I work as a cook so i need my communication skills and memory.
The side effects i currently have are brain fog, memory loss, balance issues, a bit of slurred speech those are th worst.
I'm not complaining but its just annoying and frustrating im on envarsus 2mg a day.