STEROIDS (Prednisone)

[Sax-O-Trix]

OMG.  I am at my wits end.  I look like a friggin baboon and feel like Godzilla after oh, I don't know 6 weeks or so being subjected to Prednisone for a rejection episode.  The treatment started with a three day infusion of 500 mgs and was tapered down over many weeks to the 15 mgs (pills) a day of Prednisone that I am on now.  And I think I am in rejection again because my kidney is stinging again and my creatinine has been at 1.5 twice in the past ten days (up from 1.2).  Labs coming up on Tuesday am.  If it is still at 1.5 or higher, I'll probably have to have the higher doses again. I am going avoid another biopsy like the plague.  Just got the bill confirmation thingy from the insurance company today - $7200 just for the biopsy (that's not the lab to confirm what kind of rejection or the ultrasound). 

I just feel like crap all the time, I have the "buffalo hump" on my back, my face is ENORMOUS, I can't sleep (I work full-time and kind of need to stay awake while doing my job), my words get jumbled coming out of my mouth, I have to really watch what comes out of my mouth (count to three and take a breath before I say something in a hurry), a bit of weight gain (I think it is all in my face, lol) and I have "brain fog".  In general, I feel worse now than I did when I had stage 4.5 CKD!   

Sorry for the rant, but can anyone else share their own Prednisone experience with me?  I am hoping this will all go away when all is said and done

[RichardMEL]

wow I'm so sorry you're going through all this. My only thought is that 1.5 is not a massive number for creat. Heck for me 1.5 is about normal - but everyone has different "normals" - I tend to go from about 1.3 to 1.6ish. Heck Lori Hartwell spent ~20 years at around 2 and was OK. Try not to panic just yet.

I am sorry that the preds is knocking you around so much though. I thought I would implode when they told me I had to have a methylpred influsion of 3 days of 1000mg each but actually it really didn't do much to me (and didn't help my eye condition either ) - so I suppose it was good in that respect. Again though everyone's different and I'm hoping you can get the dose down rather than up because it IS affecting you so much.

 

[Sax-O-Trix]

Richard - the funny thing is, it took a week or so for the preds to "catch up" with me.  At first, I thought "Oh, this is easy".  Lol.  Then I woke up one morning and my face was just absolutely huge, I mean HUGE!  It hasn't gone back down since that dreadful morning and it's rather embarrassing to say the least.  I have mornings when I can barely open my eyes because of the swelling.

I guess I could better deal with all of this if I weren 't getting the full blast of the less-than-feminine side effects of the Cyclosproine also... The  HAIR growth on my face is so excessive that I have shave every morning (bought Yaniqua, but haven't used it yet), the"used to be light"  hair on my arms has darkened and thickened ten-fold, I now have visible hair on my upper arms and back (yuck), and my tongue burns all the time (not 100% sure which med is doing that, but my eyes and nose run everytime I eat and it is related to whatever is going on with my tongue).  I fully expect to wake up some morning soon as a tenor 

I have to tell myself it has to be better than 15 guage needles... It is, I know it is.  I need to get on with it, suck it up and do what needs to be done

[RightSide]

....my tongue burns all the time (not 100% sure which med is doing that, but my eyes and nose run everytime I eat and it is related to whatever is going on with my tongue).  I fully expect to wake up some morning soon as a tenor 

I have to tell myself it has to be better than 15 guage needles... It is, I know it is.  I need to get on with it, suck it up and do what needs to be done

Huh!

I have experienced similar symptoms--mild burning of my tongue, watery eyes--and I thought it was either an infection or an environmental allergy.  I never thought it could be the meds.  I'll ask my own transplant neph.  Thank you.

Remember:  It's not just that a transplant, despite all these problems, frees us from dialysis.  It's also that even with dialysis, you still would have ESRD and it will take its toll eventually.   The prognosis of ESRD--even with dialysis--is "guarded," meaning that you might as well accept that you won't live as long as you could have lived without ESRD.

My own dialysis team was quite honest with me about that.

With a healthy kidney, each of us can hope to have at least a few more years of life than we could have had without it.  That's worth a lot.

[Sax-O-Trix]

Rightside - at 45, I am hoping for another 20 years either way     As far as the  tongue burning, I mentioned this to the neph team early on and they just looked at me with a "duh" look.  They didn't know what to tell me.  The burning is always slightly there, but if I eat anything with any sort of spice, I mean any spice, my nose runs and my eyes water.  My taste buds are shot half of the time also.

[Rodneyss1]

RightSide....I couldn't agree with you more!!!!  My transplant neph told me the same thing.  Your life span on dialysis is shortened.

[rsudock]

....my tongue burns all the time (not 100% sure which med is doing that, but my eyes and nose run everytime I eat and it is related to whatever is going on with my tongue).  I fully expect to wake up some morning soon as a tenor 

I have to tell myself it has to be better than 15 guage needles... It is, I know it is.  I need to get on with it, suck it up and do what needs to be done

Huh!

I have experienced similar symptoms--mild burning of my tongue, watery eyes--and I thought it was either an infection or an environmental allergy.  I never thought it could be the meds.  I'll ask my own transplant neph.  Thank you.

Remember:  It's not just that a transplant, despite all these problems, frees us from dialysis.  It's also that even with dialysis, you still would have ESRD and it will take its toll eventually.   The prognosis of ESRD--even with dialysis--is "guarded," meaning that you might as well accept that you won't live as long as you could have lived without ESRD.

My own dialysis team was quite honest with me about that.

With a healthy kidney, each of us can hope to have at least a few more years of life than we could have had without it.  That's worth a lot.

RightSide....I couldn't agree with you more!!!!  My transplant neph told me the same thing.  Your life span on dialysis is shortened.

Remember no one is promised a tomorrow!!

xo,
R

[Rodneyss1]

Well said, my dear rsudock!