Rituximab Round Two

[Sangye]

LOL-- well, they said the Chilean earthquake tilted the earth on its axis. Maybe it rolled our brains around some?

[pberggren1]

That is very strange Jack.

The only doc that I get confirmation letters from is my Rheumy. The others just phone or I phone to make the appointment. I doubt you made it all up.

[Sangye]

Oh, forgot something else from yesterday. (Man, what an action-packed day it was)

As I was driving to JHU I was listening to a talk show on NPR. One of our senators was on and they were taking calls. I stopped crying long enough to call in, and they let me ask my question on the air. I listened to it last night, and it's not at all apparent (even to me) that I had been crying for several hours, was driving 65 mph on a busy freeway and was utterly exhausted. No wonder people can't tell how sick I am, or think I'm exaggerating it. I don't mean to brag, but I'm a lot tougher than I give myself credit for.

Here's the link if you want to hear it. (My birth name is Christie) http://thekojonnamdishow.org/audio-player?nid=16449

[Jack]

Admit it Sangye, you're just making all this Wegener's stuff up!

(By the way, you would get prosecuted for using a cell phone while driving in the UK)

[Sangye]

LOL-- it's illegal to use them while driving in California, too. I don't text or do anything fancy. I rarely even use it while driving. *head hanging down in shame*

[Sangye]

And another fun part of my appt yesterday was that in addition to the usual blood draw, my doc checked on a bunch of other things. How that phlebotomist managed to get a whopping 14 vials of blood out of me I'll never know. The big hits of pred all month made my usual stinky veins even worse.

[elephant]

Sangye thanks for the information. I also learned that my Rheumatologist wants me off prednisone but slowly. She thinks I was flaring, that is when I increased my prednisone to 10 and told her. She thinks prednisone is not safe at any dose long term. So I start tomorrow taking 9mg of prednisone and she wants me on it for 6 weeks, then down to 8 mg for six weeks....once I start a flare I guess They will increase the Cellcept to 2500mg a day. Hoping I can get down to 5 mg without symptoms.

[Sangye]

Elephant, you probably already know this, but when you start the taper, you can ease your body into it by alternating doses (9mg day one, 10mg day two, 9mg day three....) for a week or two (or longer if necessary). I know you know this. Maybe others who don't will hear it for the first time, though!

Cellcept takes 4 wks to kick in. So if you're on 1,000 mg/day and you increase it to 2,500mg, that new dose won't be active for a month. And it will take a few more weeks to really get to work. That's why my current flare couldn't be treated by increasing the Cellcept. By the time we did, it was too late. So be extra vigilant for the earliest signs of a flare and increase it then.

I know you're gonna get down to 5mg just fine. I'm glad your doc is taking it slowly.

[Lightwarrior]

Here's the link if you want to hear it. (My birth name is Christie) Audio Player | The Kojo Nnamdi Show

My name is Christi

[Sangye]

LOL-- but you totally spell it wrong....