frustrated

[Guest guest]

Hi friends :-)

Still continuing to improve over here, although overdid a bit this week

and was feeling a little under the weather today...nothing major though.

So what pray tell am I frustrated about you ask????? Well, when I saw

my rheumy last week he repeated blood work. About two weeks before when

I had seen the neuromuscular specialist my CK had been at 1048, and as

you may or may not recall, he bumped my pred back up to 60mgs at that

time. Well, the rheumy's office called me yesterday to say that my CK

was back, is at 475, but that the doctor wanted me to raise my

prednisone to 75mgs per day. I finally today got a chance to talk to

the nurse there, because quite honestly I dread raising this med any

higher than it already is, and since my numbers HAD fallen, it just

didn't make a ton of sense to me. I am just barely functioning well on

this dose, and the thought of raising it and potentially making the side

effects more intense is just scary.

So, the nurse talked to him today and his words were that we were

" running out of time " , so yes, he is insistent that I raise the

prednisone. Any ideas what " running out of time " means???!!! He is

willing to let me work up to the new dose, but is insistent that I need

to be on more. Anyone have any ideas if this increase is likely to make

me feel much different (side effects-wise)??? Just feeling frustrated

right now......seems like I am getting better, and have been able to

successfully manage the med side effects pretty well, and then to have

this dropped on my lap....argh. I know it could be worse, and I know

its a blessing that I am making such gains back towards reasonable

health, just needing to whine a little I guess, and pout because I just

don't wanna do this anymore!!!! LOL

Thanks for letting me vent. Any thoughts are welcome.

BIG hugs,