update

[Guest guest]

Hey friends!!!

Well, I finally called the rheumy this morning to share that I have been

feeling off, weaker and been trying to fall all weekend, and he said to

go back to the 60mgs of prednisone and that we might need to consider

adding something to the medication regime. I have a call into the

neuromuscular doc too, so we'll get his opinion also. I have to admit I

am HAPPY to go back down on the pred....its been really hairy around

here since I went up the 5 more on Friday and I am ready to get OFF that

ride thanks!! LOL I know we still have to do something to get things

under control, but I really do think this increase in the pred was doing

something to me. Anyway...back to 60mgs today and maybe I'll get back

to myself by the end of the week. Well as much as I can get " back to

myself " that is.

So, the big question is.....am I crazy for thinking at this point that I

WANT to get on mxt in hopes of getting off the pred faster??? What

kinds of side effects am I gonna be dealing with and is anyone regretful

that they ever tried the mtx??

I am heading in next week to talk with my old GP and see if we can make

this work somehow. My rheumy said he and the NM doc will handle the

PM/DM, but that I DO need someone to handle everything else....UGH. So,

after considering it for a while, I think my old GP might be able to do

the job...we'll see after I meet with him next week. I think he'll be

more apt to take things seriously now considering all thats happened,

and that really was the only issue he and I had. Honestly though, while

he should have been a bit more proactive before, he was not negligent

either....my symptoms really were all over the place and not making a

ton of sense. He was quick to say I needed a rheumy ASAP once he

realized he was in over his head....more than I can say for the IM doc.

So we shall see. Hoping if nothing else to get a good cardiologist

referal out of him, and maybe some more liver enzyme testing.

Currently waiting to hear how the MRI came out, and when I am gonna be

getting in to see the metabolic doc. Still need to get in to see the

cardiologist for testing there, and possibly do some more liver

testing. I see the rheumy again in two weeks, and we'll redo blood work

then and see where things stand at that time. Oh, did get my Aldolase

numbers today (another muscle enzyme) and its still elevated, but

falling also, so that was good news, and my bone density scan was

normal.

On another note and kind of OT for here, I would like to ask for some

prayers, good thoughts, etc. My daughter Madison (4 1/2) is going to be

having a feeding tube placed on the 16th of this month. Its been a hard

decision to come to, and we are emotionally distraught over it, but are

trying hard to see what it will do FOR her, instead of what it requires

we do TO her to get it placed. We have been struggling for more than a

year now with her being chronically dehydrated because she is losing her

swallowing ability and so this will hopefully aleviate this issue she

has. We are very very hopeful that this is gonna make a big difference

in our ability to care for her here at home, and maybe even improve her

health enough to make full time school possible and much more. Thanks a

ton friends!!

BIG hugs,