Haven't been on in awhile...just an update

[Guest guest]

Hey all...

I've been off the board for a week or two...I'm not even going to

PRETEND to catch up....hope everyone has been well .

Last Wednesday I saw my rheumy for my test results, and he confirmed

a dx of primary lupus with sjogren's overlap and extensive CNS

involvement. After seeing the change just from the prednisone a few

days earlier, I was told by my neurologist that if I had not gone in

to this guy a week early, I'd probably be dead. I guess I was

lucky, eh? There was no sign of vasculitis, so the antibodies were

actually attacking the cells. Not sure which is worse, but I don't

particularly like the idea of the ol' grey and white matter actually

being under attack....nope, don't like that idea at all.

Thursday I was admitted into the hospital for immediate Rituxan

treatment...we were able to get around the insurance issues by

admitting me for observation and admistering the infusion that way.

I did suffer some wheezing, but steroids took care of that, and I

will be able to get my second treatment in about 2 weeks.

Problem is, they couldn't control my heartrate or blood pressure. I

knew something was up with my heart...I've been trying to explain to

my cardiologis, but I don't think he quite understood what I was

telling him. Well...they caught it at the hospital, and that was my

downfall. Be careful what you wish for, guys.

My heartrate was all over the place....from 38 all the way up to 188

at its best. My blood pressure was also quite high, and went

completely out of control Saturday night....reaching a peak of

258/145. Obviously, I also had some issues with chest pain and

headaches. I'm now on several different medications to keep my

heart within the normal range, and my blood pressure under control

(it actually is a bit low, now, but not horrible). The side effects

of these meds are just rotten...I'd actually rather be in the

hospital than on these meds, they are so bad, and I'm not into the

hospital thing.

In any case, they finally let me out late last night (reluctantly, I

think), and I get to go back in two weeks for my next treatment.

My cardiologist said there is no way we can do an electro study of

my heart until I'm done with my chemo AND steroids, which I'm going

to assume is going to be several months down the road. Until then,

my only choice is through medication. I can't tolerate what I'm on,

at this point, so something is going to have to give. I see him

Thursday and will discuss it with him...I can't spend the next 3

months nearly comatose.

Once everything is done, they will do an elecro study and determine

if I need a pacemaker. If it means getting of this medication, I'm

more than game.....let's do it tomorrow .

The great news is that there is already a difference in my symptoms

after the one rituxan treatment....I'm not in as much pain and my

neurological problems are steadily getting better. With luck I'll

be able to make a near full recovery...I'm a realist enough to know

that some of the damage is permanent (the neurologist broke that to

me), but with luck it will be minimal.

So there we are...I'm off for another nap