Rituxin - and progress?

**Alysia** · 01-04-2016, 04:24 AM

I wrote this long ago

http://www.wegeners-granulomatosis.c...s-my-list.html

**Middlesista** · 01-04-2016, 04:43 AM

Originally Posted by Birdie

Pred boosts metabolism to the point that your body deals with the Wegener's issues. Metabolism so high it can undo the damage as fast as it's done. It takes a lot of prednisone. I met a Wegener's patient in the hospital, later heard that she was moved to ICU and put on 1,000 mg of pred. as a desperate attempt. As expected it put her in a coma, but it didn't work which was also expected.

Was also on huge doses of prednisone to try and get vision back and thankfully no coma and it seemed to work for the vision at least. Poor lady - those negative outcomes just tear me up - gotta strive to be positive

Another question - wouldn't be me if I didn't have YET ANOTHER QUESTION - anyway. Is it the inflammation that is going on in the body that makes you feel hot at times? I don't mean the sweats that some folks speak of - just hot and not related to infection. I think Anne mentioned something about the the body reviving up and weight loss - it made sense

not having a lot of prednisone energy that is for sure but wonder if that is due to lack of sleep or that Rituxin has not kicked in and prednisone is just holding things in check. I'm 35mg right now -

Thanks Birdie!

**Birdie** · 01-04-2016, 05:04 AM

Originally Posted by Middlesista

Is it the inflammation that is going on in the body that makes you feel hot at times?

not having a lot of prednisone energy that is for sure but wonder if that is due to lack of sleep or that Rituxin has not kicked in and prednisone is just holding things in check. I'm 35mg right now -

I had massive prednisone induced inflamation but didn't feel hot.

I know, I know... never ask a woman her weight... 35 mg could be a lot if you're tiny. I'm 6' and 180 pounds, reducing to 35 mg I started to stop climbing the walls, but I was eating at least three times normal just to maintain my weight.

Prednisone kept me awake until I learned how to take it... as early as possible and always with a large breakfast. Early in the day is the lowest cortisol level anyway, so that's the time I take prednisone. Taking it early also means it is starting to run down by bed time.

**Middlesista** · 01-04-2016, 05:47 AM

Originally Posted by Alysia

I wrote this long ago

http://www.wegeners-granulomatosis.c...s-my-list.html

very helpful - Thanks Alysia!!

**Middlesista** · 01-04-2016, 05:59 AM

Birdie - nope, not tiny by any means and could always stand to lose some weight but heck - not like this.

I take Prednisone early in morning also I read about the 1-2 of the med-the peak and what not so knew early was best
I tend to fall asleep so early anyway - like it is a challenge to stay awake after 8pm and sometimes I crash earlier although I try to fool husband that I am really not sleeping - just resting my eyes I tell him. You know trying to pretend that I am fine

i have read a lot of folks have this awful fatigue - tired of being tired. You wrote about prednisone induced inflammation - prednisone decreases the inflammation right? Is that a typo? are you trying to mess with my mind?

Thankis Birdie

**debra** · 01-04-2016, 07:16 AM

Kaysee, hi. I am glad you're doing well.. Nice to hear good news.... Birdie, my friend, I'm sorry about you're friend from the hospital..... Deb.

**Birdie** · 01-04-2016, 01:14 PM

Originally Posted by Middlesista

i have read a lot of folks have this awful fatigue

Lately, like the last two months, I've been very slowly improving. I'm the only one I know of with three different wheelchairs entirely due to fatigue.

Originally Posted by Middlesista

You wrote about prednisone induced inflammation - prednisone decreases the inflammation right? Is that a typo?

Nope, not a typo. Different kinds of "inflamation"... Guess I should have used "swelling" instead. At times, while on high doses (50 to 80 mg), parts of my body were swelldup twice normal size, like feet literally bigger than the shoes they're supposed to fit into. Legs swollen until the skin was tearing, hospital put on big blow up pants to keep my skin from tearing open. Veins bursting all over turning me into one big black bruise. Never heard of "Moon Face"? Some people even get a big hump on their back & shoulders, or neck.

Originally Posted by Middlesista

are you trying to mess with my mind?

I have somebody else for that, and she dishes it out fairly well also.

**debra** · 01-04-2016, 02:03 PM

Hey, Birdie, quick question. Does you're insurance cover three wheel chairs? I couldn't even get a pair of cruches, dome years back! And I couldn't walk! Wow... Just wow... Birdie, sorry you had to go through all this..... Deb.