Tacrolimus and Memory Loss

[Transplant314]

I was reading on another transplant sharing group, Lyfebulb, regarding memory loss from Tacrolimus. There are a number of side effects related to this drug. I am three years post transplant and have found myself forgetful and having trouble recalling facts and names at will. I just assumed this was part of the aging process. Just wondering if anyone has had similar experiences or find this concept plausible? Thanks.

[Hidden]

You are probably correct. I am not on that medication, but have noticed memory problems with Calcitriol. It takes awhile to exit and with one kidney seems to block things up.

[HughL in reply to Hidden]

Just wondering, are you taking calcitriol for high calcium? Do you know what your calcium level when you started if so. Thanks

[Hidden in reply to HughL]

It was to regulate the parathyroids. It is dicey to regulate the calcium, vitamin D and PTH (parathyroid). After years of playing around with trying to regulate the above, the memory issue kicked in. I was changed to peri-calcitriol. Similar, but helped with memory. After way to long with the Nephrologist messing around, I asked for a scan of the parathyroid glands to check for tumors. All clean there. She kind of just ignored the situation after that. Apparently, it took some fiddling to find the correct dosage so all was even. I ended up taking 2 every three days and repeating. All has been good since. I have had this transplant since 1982 and have learned a lot about meds and the bodies reaction to them. I had a really good team of Nephrologists when I first was transplanted. One of them suggested I read the Handbook of Kidney Transplantation, by Gabriel M. Danovitch. It really is the magic book of Kidney Transplant everything. I hope I answered your question. Sometimes, I can yap on.

[HughL in reply to Hidden]

Yea thanks. I was just told by dr to keep my calcium intake lower, no meds for it yet. Someone had mentioned Sensipar also. Just wondering what people are doing when parathyroid is causing high calcium and what side effects these meds have.

[Hidden in reply to HughL]

I wouldn't because of side effects. It can also lower Phosphorus. Usually, it is used on dialysis patients. If you haven't had your Parathyroids checked, that should be the first thing besides watching Calcium intake. That PTH is difficult to regulate.

[HughL in reply to Hidden]

Okay, thanks for your reply.

[ESRDRLS in reply to Hidden]

Can you tell me that exact name of that handbook and where can I get it. Thank you so much.

[Dara3351 in reply to HughL]

My nephrologist put me on cinacalcet and my parathyroid is normal again

[Herkidney]

I have been on tacrolimus for three and a half years and have had a similar experience. Hard to tell!

[Eyak1971]

Interesting concept. In my case it comes back slowly. I remember but it takes a minute or so. I also have trouble with concentration. Have trouble with coping with several inputs at the same time. Need to isolate my attention. If it is the medication I guess it's one of the risks of transplantation. Hopefully with new science discoveries those risks Will reduce. Wonder if there is a study being done on tacrolimus?

[Transplant314]

Thanks for your response.

[WYOAnne NKF Ambassador]

You should ask your nephrologist what he knows about this?

[Transplant314 in reply to WYOAnne]

They look at me like I am crazy.

[Transplant314 in reply to WYOAnne]

She is one of the top nephrologists in NYC.

[WYOAnne NKF Ambassador]

How has your blood level been? I would think if it was high, that could cause a variety of issues, including confusion. I take Myfortic (Cellcept). When my level was too high I could hardly think.If your level is OK, what other meds are you taking? Steroids have a lot of weird side effects. The transplant center took me off of it. I was real nervous, had tremors, and severe mood changes

Some people are quick to blame the immunosuppressant drugs...could be something else you are taking or it's the combination of meds

[Transplant314 in reply to WYOAnne]

Thanks for reaching out. I am on Cellcept and Tacrolimus. My numbers have been very good and steady. I am not certain it is the immunosuppressants just putting it out to the community for discussion. These drugs are tough on the body though.

[WYOAnne NKF Ambassador in reply to Transplant314]

For me at least the transplant team figured out that my horrible diarrhea was from the generic of Cellcept. As soon as they switched me to name brand Myfortic, all improved. Guess there is just a little something different in the generic. I am 22 years post transplant. I have had the dose of my meds changed numerous times in those first 5 years. I know some on this site were switched to a different immunosuppressant.Just goes to show you that we are all different.

Take care!

[Hidden in reply to WYOAnne]

That Cellcept diarrhea is terrible. I take Imodium several times a week. My insurance denied the alternative.

[Transplant314]

We are but if the results are successful transplants the side effects are a small price to pay.

[ILMA54]

I have had some memory issues (was taking tacro and MyFortic until recently). Due to issues with my WBC dropping, they took me off MyFortic. Am just on Tacro (2 mg/day) and prednisone (5 mg/day), as well as Valcycte (450 mg/day for another month) and Bactrim.

I attributed some of my memory loss to going Code Blue during the transplant due to extremely low BP. I would say since coming off MyFortic a few weeks ago, I do seem to concentrate a slight but better.

[LisaSnow]

Cognitive issues are commonly known as "chemo brain". Many cancer patients on chemo (including tacrolimus) experience some impairment of the cognitive functions. Transplant patients take chemo agents as immunosuppressive drugs and although at lower doses generally, can experience the symptoms too. The symptoms come and go though, and often recover with time.

[Transplant314 in reply to LisaSnow]

Thanks for you response

[77896cats]

I am 7 years post transplant (double lung) so tacrolimus is a way of life. After 29 ars as a rural mail carrier, I was fired in may. I am getting lost and am losing my memory. I can't help but feel relieved there may be an explanation for this

[forthelonghaul in reply to 77896cats]

Hi 77896cats,

I hope you’re doing okay. I hope I don’t bring up negative feelings and emotions, but can you tell me why they fired you knowing your situation?

Thank you. Be well.