Very cool fingertips and toes

[cabinjar]

Hi guys, 2and a half yrs post transplant. Been experiencing intermitent cooling of the fingertips and toes throughout the day. Have had electrocardiogram and other circulation and heart test done .test show no heart or circulation problems. podiatrist says possible neropathy'. Nephologist says its an ongoing side effect of of shots given to boost system about a year ago.(not covid booster shots). not diabetic. Any thoughts ?

[PostivelyJo]

how funny … I just rang my nurses about this issue … waiting to hear back. I was wondering if it was the Immuran ( Azathioprine) I’ve started .

I’ll let you know what they say

[cabinjar in reply to PostivelyJo]

thank you very much...

[PostivelyJo in reply to cabinjar]

nothing to report. And it seems to be better . I did find this winter I was very very cold . Perhaps it’s sensitivity ? Hope things are better for you

[Balap]

The main side effects of propranolol are feeling dizzy or tired, cold hands or feet. propranolol is a beta blocker given to Transplant patients. what is your steroid dose?

[cabinjar in reply to Balap]

5mg predisone

[Balap in reply to cabinjar]

for some 5mg can cause "tiredness" along with cold hands or feet, 7.5mg might help

[WYOAnne NKF Ambassador]

My guess it is related to your immunosuppressants that you take, since all of your tests turned out normal. I am 23+ years post-transplant and I wear socks to bed at night, since my feet are so cold. My fingers are always cold.

[cabinjar in reply to WYOAnne]

Thank you for taking the time to reply. These replies at the very least ,arm me with some specific questions too ask.So thank you again...

[PostivelyJo]

hi, I spoke to my nurse as I said and I’m having my Tacrolimus/aka Adoport levels checked as this could be the cause

[Denise-80]

Hi Cabinjar - I had this briefly while I was on cyclosporine and myfortic. When I was taken off cyclosporine, it ceased. I recall my fingers would get painfully cold especially if I touched something cold. They would also ache in a cold grocery store. Of note, my doctor never attributed the cold fingers to cyclosporine but I’m positive that was the cause.

I hope your team figures out what it causing the issue for you.

Best wishes,

D

[cabinjar in reply to Denise-80]

I too am on cyclosporine and myfortic ,something to look into .Thank you for taking the time to respond.

[TeacherMommy]

I developed neuropathy in feet (and a little bit in hands) about 2 months after transplant. Getting into a warm shower sends icy stabs of pain through my feet and hands!

I had a neuro work up and they didn’t find anything. My team seemed skeptical that it was from the immunosuppressants but I assume that it is. I just try to ignore it now and am working on not letting it worry me. I can deal with a lot when I know why things are happening - it is when there is no known cause that I worry.

I hope it resolves for you!

[cabinjar in reply to TeacherMommy]

Thanks U for replying. Spoke with Nephrologist few days ago about it again ,and they're pretty much sticking with the neuropathy theory.Trying some Gabepinten for alittle while. Not optimistic it'll work.Otherwise i'll just treat it as part of my new normal.I'm sure we can all relate too that!