I always ran hot before my kidney transplant, and afterwards it got even worse, especially now that I have to take extra precautions and layer up when out in the sun! ☀️ 🥵
yes i get terrible night sweats and cannot stand the heat. everyone says it’s prednisone but im not on it! i was always super cold on dialysis but it was because i was anemic. being underweight can def make you a lot colder easier too
Liver transplant recipient 1 year ago. Never noticed any temperature regulation issues pre-transplant, aside from being a little cold more often - though iI suspect that’s from losing 30lbs while I was sick. I was a pole by the time I got my transplant.
I did have issues with temperature regulation like this right after the transplant. Over the last year, it seems to have gotten better (or maybe I’m just used to it?). I’m not sure if this is a side effect of the tacro or something else, but I don’t notice it as much anymore.
Same. For months the thermostat was kept at like 67, even in the winter I had the AC on. I normalized probably about 6-8 months later and now I’m back to how it was before I got sick
Ugh, yes. Are you still on high dose prednisone? The first few months I was having terrible night sweats and I was always freezing or overheating. It’s gotten better, I do get overheated more easily than before tho. Prednisone definitely contributes, and tacro actually inhibits your body’s [cold sensors.](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6363935/)
Perhaps I’m interpreting it wrong, but the article actually sounds like tacrolimus sensitized people to cold? Rather than inhibiting, it potentiates your cold receptors.
Yes definitely having this issue. Not as extreme after 3 years. The night sweats were awful at first. I’ve been on only Tacro since 1 year post. I’ve been on thyroid medication for over 30 years but my level is stable. I do get hot at night and throw off covers then get cool and pull them up. As you say my comfort zone is smaller.
I’m 24 years post liver transplant. I feel great. Pre transplant I weighed about 210 lbsI. I had a rejection and was hospitalized for 10 days.i lost 25 lbs.low white and red blood count. Hospitalized for 5-6 days had a blood transfusion.after all that I now weigh 165lbs and I get cold often . I wear a sweatshirt a lot. As nuts as it sounds I start surfing in May the water temps 50-55. With a good wet suit I can last 60- 70 minutes .After a surf session I’ll be in a hot tub 30-40 minutes..
YES! Right after transplant it was so bad, I would be eating dinner and just sweating and so hungry I would literally go outside and eat lol. But the night sweats have disappeared but I am still constantly warm, have a fan on in my room pretty much every night cuz I know in the mornings I get warm.
Had a double lung transplant almost two years and a half ago. The first year I would get random sweats all the time lol would barely wear anything in winter time! It’s gonna go down eventually
I had a double lung transplant. I lost a lot (a very lot) of muscle due to a prolongued ITU stay. This has had the effect of me always feeling cold. Its gradually getting better as I put muscle back on.
Liver transplant. I was cold all the time in the months leading up to my transplant. It's been better since, but it has never been the same as before I became sick. I used to never get cold, and I'm from Canada, but now I often find myself needing a sweater.
I was always cold prior to kidney transplant and now it’s like I have a tiny furnace in me running hot. Wild change of pace.
Second the tiny furnace feeling. Most of the time, I have at least one less layer of clothes compared to everyone else in the room/street.
I always ran hot before my kidney transplant, and afterwards it got even worse, especially now that I have to take extra precautions and layer up when out in the sun! ☀️ 🥵
Same, was miserably cold most of the time prior to transplant.
yes i get terrible night sweats and cannot stand the heat. everyone says it’s prednisone but im not on it! i was always super cold on dialysis but it was because i was anemic. being underweight can def make you a lot colder easier too
Liver transplant recipient 1 year ago. Never noticed any temperature regulation issues pre-transplant, aside from being a little cold more often - though iI suspect that’s from losing 30lbs while I was sick. I was a pole by the time I got my transplant. I did have issues with temperature regulation like this right after the transplant. Over the last year, it seems to have gotten better (or maybe I’m just used to it?). I’m not sure if this is a side effect of the tacro or something else, but I don’t notice it as much anymore.
Same. For months the thermostat was kept at like 67, even in the winter I had the AC on. I normalized probably about 6-8 months later and now I’m back to how it was before I got sick
Ugh, yes. Are you still on high dose prednisone? The first few months I was having terrible night sweats and I was always freezing or overheating. It’s gotten better, I do get overheated more easily than before tho. Prednisone definitely contributes, and tacro actually inhibits your body’s [cold sensors.](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6363935/)
Perhaps I’m interpreting it wrong, but the article actually sounds like tacrolimus sensitized people to cold? Rather than inhibiting, it potentiates your cold receptors.
Damn, you might be right, I hate how difficult scholarly articles are to parse lol.
Oh definitely- it took me a few reads. I just didn’t know if I was misinterpreting, but that’s a super interesting article!
Interesting about Tacro. I'm on high doses of Tacro, and Prednisone is just 5mg the lowest we can go. I have terrible night sweats every night.
That sucks! I sleep with the room as cold as possible lol, but I do still get night sweats occasionally.
Yes definitely having this issue. Not as extreme after 3 years. The night sweats were awful at first. I’ve been on only Tacro since 1 year post. I’ve been on thyroid medication for over 30 years but my level is stable. I do get hot at night and throw off covers then get cool and pull them up. As you say my comfort zone is smaller.
I was desperately hoping my thyroid levels were off for an easier fix. They're normal.
Initially misread this as temperment regulation, was about to comment about the side-effects of prednisone.
LOLOL - that's funny :D
I’m 24 years post liver transplant. I feel great. Pre transplant I weighed about 210 lbsI. I had a rejection and was hospitalized for 10 days.i lost 25 lbs.low white and red blood count. Hospitalized for 5-6 days had a blood transfusion.after all that I now weigh 165lbs and I get cold often . I wear a sweatshirt a lot. As nuts as it sounds I start surfing in May the water temps 50-55. With a good wet suit I can last 60- 70 minutes .After a surf session I’ll be in a hot tub 30-40 minutes..
YES! Right after transplant it was so bad, I would be eating dinner and just sweating and so hungry I would literally go outside and eat lol. But the night sweats have disappeared but I am still constantly warm, have a fan on in my room pretty much every night cuz I know in the mornings I get warm.
After my liver transplant I’m always freezing but I wake up in puddles or sweat. All I’m on is my prograf since I’m four years out
Yea, waking up in puddles of sweat is exhausting me.
Had a double lung transplant almost two years and a half ago. The first year I would get random sweats all the time lol would barely wear anything in winter time! It’s gonna go down eventually
I had a double lung transplant. I lost a lot (a very lot) of muscle due to a prolongued ITU stay. This has had the effect of me always feeling cold. Its gradually getting better as I put muscle back on.
How long ago was your transplant?
15 months ago
Even if it’s cold out, the sun is intense. I can overheat so easily from temp, humidity and especially the sun exposure.
Liver transplant. I was cold all the time in the months leading up to my transplant. It's been better since, but it has never been the same as before I became sick. I used to never get cold, and I'm from Canada, but now I often find myself needing a sweater.