Rituximab Round Two

[Sangye]

Do you get like that when Wegs has its marching boots on?

For me, that's either Wegs, pred or exertion.

[elephant]

I'm guessing it's the prednisone, exertion and a little of Wegener's. I think once I get this gallbladder out, I will feel better. I did the mental body check (WG) that you and LIghtwarrior did.

[DEE]

sangye love the cat pic sending a pic with my sicknote to work !!!!!!!!!!!! DEEx that shows how felt monday :- hope u feeling better today just about to get ready to go and see wg consult this morning will let u know !

[elephant]

Dee, good luck today with your WG specialist and hope everything turns out good!

[Sangye]

Dee, I'm glad it made you laugh. I hope the Wegs doc can help you sort things out today. I'm very glad you're going.

[Sangye]

Well this week is going exactly like last week: Rtx infusion day= unbelievably bad. Day after= better. 2 days after= unbelievably bad again. Grrr! This is so frustrating.

On top of the incredible weakness, my intracranial pressure feels high again-- eyes are swollen, hard and painful, headache. I can manage it with diuretics at this point but I feel lousy. Lousy lousy lousy. There, I said it. I feel better. Ironically.

[elephant]

Is your next round next Tuesday? That does not sound good Sangye. Did your dogs finish thier raw neck bones?

[Doug]

Hugs from me, too, my friend. I know that exact feeling you express, and kn ow the love and concern of friends and family goes a long way toward keeping one on course to recovery. Hugs again, my friend. You can't have too many, I've found.

[DEE]

im back !!!!!!!!!!! arrived hosp 10 am left 2 pm
had to wait short while for wg case meeting to finish
then introuduced to three 2nd year medical students which took med history general health and symptoms
also asked about how it affected family on daily basis etc
hubby with me today too had bloods etc done bettter results bloods in urine improved thinks face rash and vascu rash on chest a combination of active wg and infection
went through all medcation decided needed to up cyclo back to orignal dose and up preds again
thinks i should give cyclo alittle longer as i have acess to wg cosult on daily basis if needed twenty mins away
seeing him again oin three weeks to see own doc every week and repeat bloods every two weeks !!!!!!!!!!!!!!! thats about it
im very very tired now
hubby just brought me a pizza in food at last :-
the one big bonus we both said came out of today three young students who had never heard of wg this morning now know alille about it and what its like to live with it
thanks for your good wishes sangye take care of u best wishes to all DEE x
still no work!!!!!!

as still will have back up on daily basis with wg consult

[elephant]

Glad your visit went well and your in good hands!