I wish they'd TELL me these things!

October 7, 2005

As you may know, I was just recently put on 100mg of prednisone to

halt the CNS involvement I've been having. I guess the doctor

figured I knew the potential side effects, and I know most of them.

I was on 20mg awhile back, and had no problems except mild anxiety

and jitteriness.

WELL, I've been on this dosage for a couple of days now. I was

talking to my mom this morning, and all of a sudden she says, " OH MY

GOD...LOOK AT YOUR FACE! " I figured I was swelling a bit...to be

expected. Went to the mirror, and my cheeks, forehead, under my

chin...heck, my whole face...was BRICK RED. As in lobster red. I

wasn't sure if I was having a reaction, a new symptom, or what.

OK, call into doctor. Hmmmm....what's that? He's in New York

today? Gee....lucky him. His nurse said she'd call one of the

doctors at the hospital to find out what to do.

Half hour later, a doctor calls back, and asked where the rash was.

He then tells me that this is EXPECTED, and it is flushing, not a

true rash. OK, cool. He also mentions that he called MY doctor

beforehand to double check, and he was told that I am NOT to stop

the prednisone, or even lower my dosage to wean off, under any

circumstances, no matter how bad the side effects. He said it is

essential that I stay on it until they can check my new lab results

and start other treatment, if that is even possible right now. Yes,

sir....got it. Understood. I sure hope this is the worst of my

side effects.

So, just in case any of you have not been on high doses of

prednisone before, a lobster face is perfectly normal and is

expected. JUST IN CASE YOUR DOCTOR FORGETS TO MENTION THIS.

Have a great weekend .

PS...I get to go to my company picnic tomorrow. Red face and all.

BUT, no pain. Woohoo! I'll trade a red face for that any day. Not

sure about a moon face (I still get to look forward to that), but

lobsterhead is quite acceptable compared to leg-drag and paddle

hands and sausage fingers and tremors, not to mention the seizures.

Well, ok, I had a *timy* one yesterday, but no confusion afterwards,

so I'm getting better .

October 7, 2005

I always thought of prednisone as being the miracle drug created by the devil!!

It works wonders, but damn, those side effects!! I was weaning myself down from

a high dose that I took for a flare. I have 5mg and 20mg tabs so I can adjust

my dose as needed. Well, I couldn't figure out why I felt like my emotions were

so out of control. I just felt like I wanted to haul off and HIT someone.

Well, my 20mg tabs had expired!! I switched to my 5mg tabs and the problem

eased up!! Psychosis. Not a good thing!! It felt like it was me but NOT me.

It's strange and difficult to explain. I knew I was angry, but I couldn't

understand why. I had no control but I was acutely aware of the emotions. I'm

telling ya, the devil himself sent us that wonderful little miracle pill!!

LOL.....Marina

October 7, 2005