Posted by Margie on 6/19/10

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Hello everyone. Sorry to hear the terrible siuations that
Prednisone has put you in. Unfortunately I am here for the
same reason, sort of. Don't get me wrong. I completely
understand how angry all of you are, how much pain you are
in and the feeling of a lost future.

I was diagnosed with kidney failure when I was 34. I was
in a fairly new relationship after a bad marriage and I
was extremely happy. I was really O.K. with the news
because the doctor said if I will do what he tells me to
do, I could get 5 years out of my kidney (I was only born
w/ one) before I would need dialysis or transplant. I
thought heh, good deal. I really wasn't concerned.

There was however, a drug regimine I would have to follow.
Among the meds were Prednisone. And a hugely high dose.
The idea was to try to generate functioning in the failing
kideny. I was started on 160mg a day at the start. Then I
was to taper down to 1mg over the 5 years.

I really had no idea what was about to happen. The doctor
just said they may make me hungry, I could get brittle
bones and I would gain some weight. I figured I could work
out and benefit from the steroid(Prednisone). But NOT!!! I
developed huge unsightly bulges on my arms and on my neck.
I also thought I would eat less to not gain weight. But
WRONG!! Prednisone slows your metabolism and so does not
eating. Your body thinks you are starving it and stores
what it has. So I was really slowing it down. I am 5 feet
tall. I weighed 126 on the day the doctor told me I had
kidney failure. Within 6 months of taking the Prednisone,
I weighed 210 pounds!!!!
I was literally Humpty Dumpty.

I worked where I had to walk most of the day. I managed a
furniture store. The first few months I didn't so much
have alot of pain, just some really weird feelings and not
much sleeep. But then the pain set in. It was in my knees
and ankles mostly. I ended up over the next few years
breaking each knee at least 7 times and each ankle 8
times. I had to work out of a wheelchair and use crutches
or a walker if I wanted to try to get around.

As the dosage of the Prednisone was going down, so was my
weight and the pain got a little better. But sometimes I
had episodes of it feeling like someone was driving a
railroad spike into my joints. I used a cane on days I
felt better and used it for 5 more years.

I was sent to an Orthopaedic doctor and he said my knees
would have to be replaced and probably my ankle and hips
too. Since I was awaiting a kidney transplant, I had to
wait to do my knees. I got a kidney in Oct. 2002. My
boyfriend's mom gave it to me. Prednisone is one of the
anti-rejection meds so I never was able to get off of it.
I had my both of my knees replaced in feb. 2004. And right
now I am awaiting another transplant as this first
transplant is failing. I need my hips replaced and my left
ankle but I have to wait again until I get a kidney. I
have Avascular Necrosis in both my ankles, both my hips
had it in my knees and some other smaller joints. My whole
spine is in constant pain. I have not been diagnosed with
anything there yet besides Osteoporosis. But I feel it is
in bad shape.

I have also recently found out that I have Adrenal
Insufficiency. Which I found out could come about as a
result of long time steroid use. I have been on steroids
(Prednisone) for 13 years and will probably need them for
life. And the treatment for Adrenal Insufficiency??
Prednisone. However, that makes sense. The adreanl glands,
located right above the kidneys secrete the hormone
cortisol. When the adreanl glands are not working properly
you need cortisol from somewhere and Prednisone = Cortisol.

There is probably more I forgot to tell, but as you can
see I do understand your pain. However. Steroids
(Prednisone) are really a miracle drug. It is a horrific
shame of it's side effects, but it has also saved many
lives. I wish I didn't have to take it. It has caused
irreversable damage to my body and my mental state. But I
think I would just as soon be alive and a crumpled mess
than to die without it.

Good Luck and God Bless to ALL!!!

Prednisone, 6/19/10, by Margie.

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