Zanna/lynn/chuch/dawn/annette/terry

[Guest guest]

Annette, I have MCTD (Mixed Connective Tissue Disease) also, with PM being my

primary focus, but

MCTD is also a separate disease. My doc says often MCTD is assymetrical. Has

your doctor looked in

that possibility. My right side is weakest/most painful and it is my dominant

side, Lynn.

Chuck, I was tried on the MTX up to 25 mgs with prednisone at 20 or 25 mgs (I

forget which--and

could have been more) and it didn't work for me. My doctor weaned me off that

while starting on

Imuran at 50 mgs per day increasing by 50 mgs monthly until reached 150 mgs

daily. Been on that

regimen since Oct 1998 and was able to reduce pred oh, say, in early 1999 and

now am down to 6 mgs

pred with good results. The doctor put on highest MTX she thought I could have

as wanted to try

that to its fullest so we could say we really tried everything before the

Imuran.

Every case is different, but it might be worth a suggestion

Oh, yes, Dawn, as you know, treasure those years highly---before long they'll be

asking for the car

keys!! I so enjoyed every moment of Marc's growing up.

Lynn, friend at the clothing bank where I volunteer had colonoscopy done and

said she lost 5 lbs!

Also, they've explored spleen problems and spherocytosis have they. I know

that's usually an

inherited problem but it's worth an ask. My sister's kids all had it years ago

(1963), her husband,

bro-in-law and father-in-law. What found it was my littlest nephew, age 6, was

getting more and

more anemic and nearly died before they found it. Went to Mass General and they

found it there and

did splenectomies on all and all the kids are in good shape today--others have

died, but of old

age!! And all those surgeries were free due to the unusualness of the case.

Hope they find out

what's causing yours in a more simple way!! My CPK skyrocketed like that one

month and we just

waited (was on Imuran by then--was last year) and came back down by itself;

hopefully yours will.

Zanna, I didn't write the AAADD at all. Got it from a Georgia friend but I might

have posted it here

before--can't remember!!!

Terry, why a month for the biopsy results to come back--mine sure didn't take

that long!!! I can't

imagine that.

Still pray for rain in Colorado--thankyouverymuch!

Lelia