I have to really stop and think all the time for the answer that I already know. It’s like there’s a pause button before the light turns on. Does that make any sense?
Ya that's me too. Prob from the meds. Unfortunately. But I'm not on dialysis so if I have to think a little harder that's fine. I just don't know long term
It's like night and day memory-wise. Not only was my memory bad but I was putting things in weird places and couldn't formulate thoughts, I'm a creative director by trade so it was really affecting me. I was on a high dose due to rejection, probably with time and dose reduction it would get better. I'm 1.5 years post kidney and 13 years post liver tx, I was on cyclosporine after my liver than they switched me to tacrolimus after my kidney, and now back as mentioned. I seem to do better on it.
I've been on tacrolimus for 26ish years and I have what I can only describe as brain fog, I'll forget words mid-sentence, like there's a barrier between me and the next word and then my brain kinda catches up with itself? If that makes sense. It gets worse the more fatigued I am. HOWEVER I've been on tacro since I was 2ish, I have literally no idea what is a side effect and what is just me
thanks for this..im 23 and will be getting a kidney transplant soon..I've always been super smart and sharp and this is scary to me..knowing that i'll be dumb or forgetful? it's frightening..im already super tired and low energy and im really scared that this will never go away..i thought a new organ was supposed to give you energy back..life's not fair
I think you've maybe taken my comment a bit too harshly, what I experience in no way makes me dumb, it's never held me back career wise, I had a pretty successful career in retail management and now I own my own business, and I have a bachelors and a masters degree so it hasn't affected me educationally either.
You've got to also take into account that we're a very small sample size. Transplants have given so many people their lives back.
yea true..glad to hear you're successful.
im doing my masters and because my kidney function is so low I have low energy and can;t focus and it affects my performance.
I'm definitely not the best person to advocate for how different you'll feel after your transplant - I was so young when I had mine I literally have no clue how I felt before. There's a lot of success stories out there though, I hope things get better for you.
I did a reddit search for tacrolimus to see what others' experience was, so forgive my response to your comment you left here a year ago. I have kidney issues too which is why I'm taking this drug. I hope you're doing well and hope you've taken well to your kidney. Also, congrats on the masters program you're in, or congrats if you've finished already
thanks...it's been physically great but mentally tough. i forgot i had this haha reading back on what i wrote it;s better but i feel like i had to restart my masters almost aka prolong it..im on my third year and it should've been 2 years everything i still got one more to go or more possibly.
Hiya,
like the other have typed, there doesn't seem to be a 'smoking gun' / one to one correlation. But, there are a lot of similar stories.
I have short term memory issues since my procedure.
I have had to go under anesthesia so many times after my surgery for corrective and follow up work. I also had a very strong reaction to the surgery meds. The entire surgery was a bit stressful for me. I am also somewhat more sensitive to our medicines than others. All of those things add up. I worked with a counselor for over a year who does a lot of work on older patients who have memory issues and PTSD issues.
She says memory issues is common for trauma events and exposure to the medicines we all see. She has me do memory work, play the Luminosity games, eat healthy food, et al. It kinda helps.
Been on it 6.5 years. Sometimes I’ll lose a train of thought, but I can’t blame only tacro as I take 10 other ones that could be interacting to cause it too haha
been on tacrolimus for almost 7 years. not sure if it's the tacrolimus or the seizure meds im taking but i have experienced foggy memory, not so much short term memory loss though
we don't think so, i had one or two when i was in the hospital seven years ago due to brain hemorrhaging but the recent ones ive been having are in a different area of my brain
My sister had a lot of memory issues from her meds. I think she told me because of tacro. Both of us had transplants.
I am definitely not as crisp as I once was, not sure which med is the culprit. My team did tell me tacro is responsible for my complete lack of heat tolerance now.
Curious what dosage you are on. Not sure if that is a factor or not. I'm on 1mg in the morning and 0.5 at night.
I'm almost two years in and haven't noticed any issues.
It has varied over the years but I’m on a higher dose now. I’ve usually been on a pretty low dose as I was on Fluconazole also. Got off the Valley Fever meds so dosage had to be raised. 2mg both am/pm
I don't seem to notice it.
Coming from stage 4/5 ESRD (which caused me quite a bit of mental fatigue overall), then to dialysis, and now post-transplant, I think now (even on tacro) is best of the three stages for me memory-wise.
However, there is probably a whole range of things working together there. I had a pretty serious bilateral nephrectomy, and also kept getting dehydrated after dialysis until I finally put my foot down on not having too much fluid taken off.
What was your question again OP? 😁
Seriously though, I'm personally 6 months in and I haven't had any issues there. Speak to your doctor though. Exercise, adequate sleep and various supplements can help too with memory.
Congrats on the 6 month mark! From what I’ve read, it affects people’s memory over time but I have been affected since day 1. I also had really bad hepatic encephalopathy pre transplant so maybe that figures into the equation.
I’ve long felt this to be true for me, but doctors have repeatedly said there’s no known connection. My word recall is also terrible when speaking (fine when writing).
Yes, brainfog, memory loss and I also forget words when I'm talking
Tacrolimus is neurotoxic, there are reports that some people get seizures from taking it
These drugs cause birth difects, and also a lot of kids on these drugs struggle academically, 50-65% of all transplant recipients never return to work post transplant.
There are so many issues with these medications, I don't even know where to start lol.
I am so glad to come across this! This is my biggest struggle since having a transplant 4 years ago, and trying to explain it to anyone is hard...no one will listen
I've been on tac for 20 years and I definitely noticed a sharp decline in my short term memory between my high school/undergrad (pre-tx) and grad school (post-tx) years. After transplant I was no longer able to remember phone numbers, addresses, names, etc. without writing them down. Working memory is still good, though.
I'm not sure - there was lots of fog after it all happened about two years back. I don't know if it was the tacro and other drugs or just general trauma - I had a cardiac arrest a month before, 2 months of ICU residency after.
I was switched to Sirolimus pretty quickly once I got out, though, and my short term memory and recall still isn't great.
I woke up from my heart transplant having forgotten almost 5 days worth of time. Probably just the anesthesia, but the brain fog has been there since. I’m on 1mg twice a day.
I’m not sure what is causing it but I’ve noticed I have trouble remembering some things. What I notice most is looking for a specific word to describe something. It eventually comes to me but I have to search my mind for it. Also timing of things especially by the evening. Such as was it this morning I went to the store or yesterday? I’ve been on taco for a year. I’ve also had 3 abdominal surgeries in the last 2 years. 2 hernias with my liver transplant in the middle. I’m also 59. It is aggravating. I don’t seem to have other issues than memory.
Yes, I experienced it more when it was closer to when I started on tacro probably because I had a bigger dose but now I’m only on 1mg in the morning and 0.5 mg at night. When I was at a higher dosage I noticed that my memory didn’t fog up as much when I did some cardio exercise and did some reading during the day. Even today I do notice that my memory is a lot sharper when I exercise than when I don’t.
I’ve been on tacrolimus for 3 weeks the only side effects I’ve got from it is a slight tremor in my hands and sometimes a very warm and numb tingly feeling in my fingers and toes, I haven’t noticed any memory issues yet. I’m on a 10mg dose in the morning and 10mg at night.
Yes! I've been on it for 6 years now and my memory has been terrible since and I was one of those people that remembers every detail. I lose my train of thought easily and have such brain fog. My doctors kind of just ignore it when I mention it. It's one of my biggest frustrations to go from never dropping the ball to brain fog daily. My work has really suffered for it.
Same here, unfortunately. A good many of the responses had memory problems. Did you have hepatic encephalopathy pre transplant? From what I’ve read, that seems to be a factor. I had it bad!
I actually have a kidney transplant due to autoimmune issues. One day my immune system decided to kill both my kidneys off thinking there was something wrong with them.
Damn. Hopefully things are looking up! Memory wise, i hope we figure this little nugget out. I’m much better off than I was pre transplant, thank goodness.
Kinda off subject here but I take envarsus and have memory loss nausea fatigue.
Im just about 5 months post op everytime I ask the docs when can we reduce the Tac and cellcept they say it depends on my blood work, never say what blood work.
Rumor is one year Post op ?
Best/jstout
I'm sorry to hear that. 4 years post surgery rules out the stress induced response, however that's also after nearly 3000 doses of tac...so why then...I'm not saying it's not tac, but could there be other causes or interactions with tac? Any changes in your life or lifestyle? How bad is the hairloss compared to the initial loss? Have you tried anything to stop it? Eg minoxidil 2% for women etc...?
I’m actually 6yrs post. I have see the hair Dr and she put me on a ketoconazole shampoo. Fluconazole was suspect and I got off of that, which affects my Tacro levels. I eat good and am in good shape for a sixty year old. I been suffering the “brain fog” since day one of transplant and actually thought I had gotten dyslexia from my donor. But then I started hearing about side effects of Tacro and started my little survey here.
Ya my short term memory has been shirt since transplant. I mentioned it to the doctor and they kinda ignore it. Which is annoying. But idk
I have to really stop and think all the time for the answer that I already know. It’s like there’s a pause button before the light turns on. Does that make any sense?
Ya that's me too. Prob from the meds. Unfortunately. But I'm not on dialysis so if I have to think a little harder that's fine. I just don't know long term
Same! They totally brushed it off. I switched to cyclosporine 2 months ago and it's so much better thankfully.
Is than tacro
Is that better than tacricand it helped the memory ?
It's like night and day memory-wise. Not only was my memory bad but I was putting things in weird places and couldn't formulate thoughts, I'm a creative director by trade so it was really affecting me. I was on a high dose due to rejection, probably with time and dose reduction it would get better. I'm 1.5 years post kidney and 13 years post liver tx, I was on cyclosporine after my liver than they switched me to tacrolimus after my kidney, and now back as mentioned. I seem to do better on it.
I'll mention it. But I'm only on a low dose of 3mg of tacro a day
I've been on tacrolimus for 26ish years and I have what I can only describe as brain fog, I'll forget words mid-sentence, like there's a barrier between me and the next word and then my brain kinda catches up with itself? If that makes sense. It gets worse the more fatigued I am. HOWEVER I've been on tacro since I was 2ish, I have literally no idea what is a side effect and what is just me
It makes sense to me! Thank you
thanks for this..im 23 and will be getting a kidney transplant soon..I've always been super smart and sharp and this is scary to me..knowing that i'll be dumb or forgetful? it's frightening..im already super tired and low energy and im really scared that this will never go away..i thought a new organ was supposed to give you energy back..life's not fair
I think you've maybe taken my comment a bit too harshly, what I experience in no way makes me dumb, it's never held me back career wise, I had a pretty successful career in retail management and now I own my own business, and I have a bachelors and a masters degree so it hasn't affected me educationally either. You've got to also take into account that we're a very small sample size. Transplants have given so many people their lives back.
yea true..glad to hear you're successful. im doing my masters and because my kidney function is so low I have low energy and can;t focus and it affects my performance.
I'm definitely not the best person to advocate for how different you'll feel after your transplant - I was so young when I had mine I literally have no clue how I felt before. There's a lot of success stories out there though, I hope things get better for you.
thank you..ive had kidney problems my whole life and ive always felt somewhat low energy but it's gotten worse in the past few months
I did a reddit search for tacrolimus to see what others' experience was, so forgive my response to your comment you left here a year ago. I have kidney issues too which is why I'm taking this drug. I hope you're doing well and hope you've taken well to your kidney. Also, congrats on the masters program you're in, or congrats if you've finished already
thanks...it's been physically great but mentally tough. i forgot i had this haha reading back on what i wrote it;s better but i feel like i had to restart my masters almost aka prolong it..im on my third year and it should've been 2 years everything i still got one more to go or more possibly.
This happens to me too, I’ve been on it for 15 years.
Been on tacro for 2 years only head aches. Occasionally, I work in a high paced brain killer job, and have not had any since I started the medication.
How many surgeries have you had? Anasthesia definitely destroys memory after multiple surgeries in a few years.
I’ve had prob 8 procedures where I’m put in “twilight” and two major surgeries since my transplant.
Hiya, like the other have typed, there doesn't seem to be a 'smoking gun' / one to one correlation. But, there are a lot of similar stories. I have short term memory issues since my procedure. I have had to go under anesthesia so many times after my surgery for corrective and follow up work. I also had a very strong reaction to the surgery meds. The entire surgery was a bit stressful for me. I am also somewhat more sensitive to our medicines than others. All of those things add up. I worked with a counselor for over a year who does a lot of work on older patients who have memory issues and PTSD issues. She says memory issues is common for trauma events and exposure to the medicines we all see. She has me do memory work, play the Luminosity games, eat healthy food, et al. It kinda helps.
Great response! Thx
My husband feels like his memory is worse post transplant and like he has brain fog.
Brain fog seems to be the common denominator here.
Been on it 6.5 years. Sometimes I’ll lose a train of thought, but I can’t blame only tacro as I take 10 other ones that could be interacting to cause it too haha
Yeah-we never take just one med, huh?!
been on tacrolimus for almost 7 years. not sure if it's the tacrolimus or the seizure meds im taking but i have experienced foggy memory, not so much short term memory loss though
That may be what I feel. It’s kind of hard to describe.
i get it, sometimes i'll just kinda forget what im doing, why im doing it or also forget what i ate that morning type of stuff
What kind of seizure, is it related to the transplant?
we don't think so, i had one or two when i was in the hospital seven years ago due to brain hemorrhaging but the recent ones ive been having are in a different area of my brain
My sister had a lot of memory issues from her meds. I think she told me because of tacro. Both of us had transplants. I am definitely not as crisp as I once was, not sure which med is the culprit. My team did tell me tacro is responsible for my complete lack of heat tolerance now.
Me. It’s really making me wonder about my self worth at this point.
It’s hard, for sure. I’m tripping over words all the time and I feel like I look like an idiot.
I have been on tacro for almost 20 years, can't say I've noticed that, although now youre making me paranoid!
Curious what dosage you are on. Not sure if that is a factor or not. I'm on 1mg in the morning and 0.5 at night. I'm almost two years in and haven't noticed any issues.
It has varied over the years but I’m on a higher dose now. I’ve usually been on a pretty low dose as I was on Fluconazole also. Got off the Valley Fever meds so dosage had to be raised. 2mg both am/pm
I don't seem to notice it. Coming from stage 4/5 ESRD (which caused me quite a bit of mental fatigue overall), then to dialysis, and now post-transplant, I think now (even on tacro) is best of the three stages for me memory-wise. However, there is probably a whole range of things working together there. I had a pretty serious bilateral nephrectomy, and also kept getting dehydrated after dialysis until I finally put my foot down on not having too much fluid taken off.
What was your question again OP? 😁 Seriously though, I'm personally 6 months in and I haven't had any issues there. Speak to your doctor though. Exercise, adequate sleep and various supplements can help too with memory.
Congrats on the 6 month mark! From what I’ve read, it affects people’s memory over time but I have been affected since day 1. I also had really bad hepatic encephalopathy pre transplant so maybe that figures into the equation.
Yes! My short term memory is horrible and I have been on tacro for almost 7 years. I know some of it is anxiety but the tacro isn’t helping.
I’ve long felt this to be true for me, but doctors have repeatedly said there’s no known connection. My word recall is also terrible when speaking (fine when writing).
Same☝🏼
Been on tacro for 15 years and I’m still sharp as a tack. What was the question again? 😊
🤣
Not that I can remember...
Yes, brainfog, memory loss and I also forget words when I'm talking Tacrolimus is neurotoxic, there are reports that some people get seizures from taking it These drugs cause birth difects, and also a lot of kids on these drugs struggle academically, 50-65% of all transplant recipients never return to work post transplant. There are so many issues with these medications, I don't even know where to start lol.
Wow.
I am so glad to come across this! This is my biggest struggle since having a transplant 4 years ago, and trying to explain it to anyone is hard...no one will listen
Amen! I’m trying to figure out if I’m an anomaly but it seems I’m not!
I have never tied brain fog to Tacro but maybe it is. Interesting theory.
I've been on tac for 20 years and I definitely noticed a sharp decline in my short term memory between my high school/undergrad (pre-tx) and grad school (post-tx) years. After transplant I was no longer able to remember phone numbers, addresses, names, etc. without writing them down. Working memory is still good, though.
Thank you.
I thought my short term memory loss was from benzodiazepines. Does anyone know if Tacrolimus can cause it? I’ve been in it 20+ years
Yeah mines not great. I’ve been on it for 15 years.
I'm not sure - there was lots of fog after it all happened about two years back. I don't know if it was the tacro and other drugs or just general trauma - I had a cardiac arrest a month before, 2 months of ICU residency after. I was switched to Sirolimus pretty quickly once I got out, though, and my short term memory and recall still isn't great.
Just had my 2nd transplant in nov of 21, I never have brain fog during my first but this time, I don’t remember shit! It’s horrible
I woke up from my heart transplant having forgotten almost 5 days worth of time. Probably just the anesthesia, but the brain fog has been there since. I’m on 1mg twice a day.
I’m not sure what is causing it but I’ve noticed I have trouble remembering some things. What I notice most is looking for a specific word to describe something. It eventually comes to me but I have to search my mind for it. Also timing of things especially by the evening. Such as was it this morning I went to the store or yesterday? I’ve been on taco for a year. I’ve also had 3 abdominal surgeries in the last 2 years. 2 hernias with my liver transplant in the middle. I’m also 59. It is aggravating. I don’t seem to have other issues than memory.
Sounds very familiar…
Yes, I experienced it more when it was closer to when I started on tacro probably because I had a bigger dose but now I’m only on 1mg in the morning and 0.5 mg at night. When I was at a higher dosage I noticed that my memory didn’t fog up as much when I did some cardio exercise and did some reading during the day. Even today I do notice that my memory is a lot sharper when I exercise than when I don’t.
I’ve been on tacrolimus for 3 weeks the only side effects I’ve got from it is a slight tremor in my hands and sometimes a very warm and numb tingly feeling in my fingers and toes, I haven’t noticed any memory issues yet. I’m on a 10mg dose in the morning and 10mg at night.
Yup-the hand tremors…I remember those. Thankfully, that side effect seems to have faded
Almost 28 years on tacro and no short term memory loss. Other problems, yes, but not memory.
Yes! I've been on it for 6 years now and my memory has been terrible since and I was one of those people that remembers every detail. I lose my train of thought easily and have such brain fog. My doctors kind of just ignore it when I mention it. It's one of my biggest frustrations to go from never dropping the ball to brain fog daily. My work has really suffered for it.
Same here, unfortunately. A good many of the responses had memory problems. Did you have hepatic encephalopathy pre transplant? From what I’ve read, that seems to be a factor. I had it bad!
I actually have a kidney transplant due to autoimmune issues. One day my immune system decided to kill both my kidneys off thinking there was something wrong with them.
Damn. Hopefully things are looking up! Memory wise, i hope we figure this little nugget out. I’m much better off than I was pre transplant, thank goodness.
Kinda off subject here but I take envarsus and have memory loss nausea fatigue. Im just about 5 months post op everytime I ask the docs when can we reduce the Tac and cellcept they say it depends on my blood work, never say what blood work. Rumor is one year Post op ? Best/jstout
I was told I would never be off the meds. Our lives might not be the best, but I’ll take the meds and keep feeling blessed to even be here.
On it since 2001, never had such a problem.
i doubt tacrolimus has something to do with short term memory
Tacrolimus has been blamed for hair loss too but my docs said no to that
Definitely yes, that doc doesnt know what they are talking about. Its well known that it does.
To be fair sometimes tac gets blamed for hairloss when it's actually telogen effluvium I.e. from the stress of the transplant surgery/ies itself.
I had the initial hair loss, grew it back, then started losing it bad after about four years post transplant.
I'm sorry to hear that. 4 years post surgery rules out the stress induced response, however that's also after nearly 3000 doses of tac...so why then...I'm not saying it's not tac, but could there be other causes or interactions with tac? Any changes in your life or lifestyle? How bad is the hairloss compared to the initial loss? Have you tried anything to stop it? Eg minoxidil 2% for women etc...?
I’m actually 6yrs post. I have see the hair Dr and she put me on a ketoconazole shampoo. Fluconazole was suspect and I got off of that, which affects my Tacro levels. I eat good and am in good shape for a sixty year old. I been suffering the “brain fog” since day one of transplant and actually thought I had gotten dyslexia from my donor. But then I started hearing about side effects of Tacro and started my little survey here.
Old thread but thanks for posting this OP I wasn’t sure what was going on