info wanted

[Ang]

this is  predominantly directed to transplant patients:

after being fortunate enough to have had a  transplant some 15 months, i have had 2 bouts of
what i call excessive sweating.
 this occured twice(3 weeks ) each time.it was mainly overnight and if i exerted a lot of energy. i was told this is down to steroids

any thoughts or facts would be welcome

also as the term i use to describe is a Buzzing feeling throughout the body
all labs are good
i pretty much been told to live with it

[natnnnat]

Buzzing in the body, that's a strange 'un, says Gregory.  He never had the buzzing feeling, though his legs kick about a bit still.  He only ever had night sweats as part of CMV.  He got CMV with his kidney, and it manifested early on, and then just recently he got it again.  And he also had night sweats with the pneumonia.  So the night sweats have only ever been associated with bad times for him.

In your case, "they" aren't worried, so that's good.   

[Riki]

I've never had sweating..... after 15 months I don't think you should still be on steroids, unless you've had a bout of rejection.  Steroids can cause other problems with long term use.

The buzzing, however, I can somewhat relate.  After my first transplant, I shook really badly.  I was still a teenager at the time.  I remember a teacher yelling at me because I couldn't keep up with the rest of the class when note taking.  He didn't seem to understand that with the shakes, I had to slow down my regular pace of writing in order to keep it legible.  Anyway, the buzzing could be that, but you feel the shake more than you see it.  I still do that, and I haven't been on any antirejection meds in years.




Edited: Fixed smiley error - okarol/admin

[jeannea]

I had some night sweats after transplant. And really bad hand shakes.

Here is my theory (not researched or proven in any way). Have you heard how one of the first symptoms of HIV is night sweats? I think the sweats is somehow related to the immune system being suppressed. Your immune system is suppressed by steroids and prograf or whatever you're on. For some reason the body reacts to the screwed up immune system by major sweating. Weird isn't it? I think it means the drugs are doing their job.

[RichardMEL]

Riki I think in oz a maintenance dose of preds is common.

Certainly with my tx team they have told me multiple times that you start off on 3 main anti-rejection meds: either cyclosporin or trac(prograf), mycrofenelate(however it's spelled)-cellcept and preds/steroids. Over time they try to wean you off *one* of these - usually the one you tollerate the least well - but keep the other two. From what various have told me this is in the 2-3 year post tx timeframe. As for me I am down to 5mg of pred and seem to do OK on that with no real issues.

However the "boddy buzz" - ueah I have felt that from time to time - usually when I'm lying down in bed. I haven't had sweats or anything like that. The "body vibration" is weird for sure - it comes and goes. I wonder if it has something to do with the connection of the new kidney to that artery that runs into the leg - is it the femeral artery? I keep forgetting - anyway THAT one buzzes and it's almost like if I'm in the right position it can be felt through the whole body sometimes.

it's not unpleasant per se, but I have definitely noticed it as an unusual sensation...

[Ang]

thanks for your responses folks, don't reckon its HIV,been tested. 

food for thought thought

[jeannea]

Sorry if I wasn't clear. I don't think you have HIV. I think the immune suppression makes our bodies act in many ways like those with HIV. Different causes, many similar results.