FDA OK's RTX for WG

Feel like you're watching an army flick with all those acronyms. Well that's what happens when you're immersed in the world of Wegener's Granulomatosis. You become acquainted with all sorts of goofy words you'd never have even considered looking up before...

The good news.... FDA has just aproved Rituximab (RTX) for the treatment of Wegener's Granulomatosis. This is great news as this powerful yet expensive drug has been one of only two 'big guns' used to get Wegener's under control when in a flare or at initial diagnosis. The other big gun is Cyclophosphamide / Cytoxin (CTX) which is a chemo drug that causes all sorts of other damage to the body. I've been on CTX for 10 months - EVERY DAY - and it sucks. It's kept me alive, but it still sucks. On that note, I finally decided to cut my hair. I lost, hmmm, I'd say about 70-75% of my hair but still had good distribution of the survivors and was holding on tight to the dream that it still looks OK. Meanwhile I was getting new growth underneath that was looking quite goofy. Soooo, I just cut all my hair to the length of the new growth and lo and behold, my new hair is CURLY.

So now I have a chunky pred face, neck, and back and short and curlies on top. Not a pretty picture to imagine, but ironically I feel much more human since the hair purging. Brian is still trying to get used to it, but all in good time.

I think I dodged the bullet

I think I might have had a little pred rant last time.

Hana ended up going through the cold/flu thing while she's with her grandparents and I think I might have dodged it. Pheeee-uuuf.

I'm noticing a considerable improvement in my sinuses in that I don't have to wake up 15 times a night to blow my nose and unstuff my breathing passages. Yeah! Headaches are also subsiding. I get the occasional 'zap' but I know how to deal with those now. There is no pressure or pain behind my eyes. My skin is not doing the 'Johny technicolor' show it use to, and my face feels floppier when I touch it - it doesn't feel like an overinflated balloon that might pop at any moment. On that note, love your wrinkles.... you have no idea how great they are until you loose them... I'm so looking forward to having my old wrinkles back. My hair is a circus show, but I am starting to get some new undergrowth (about an inch and a half) and my fifteen strands of long hair fighting for supremacy are keeping the peach fuzz underfoot slightly in control.

Now to the job of getting strong again. I have lost pretty much all of my conditioning (other than the basic minimal requirement to stay upright) so it's time to get it back.

Old Marta, here I come.

RTX ROX

So it's been just over a month since my first Rituximab infusion and things are looking brighter. I had a bit of a dip but it seems to be clearing itself up. One little downside is that after just one day back at Nursery School, Hana got some bug and now I think I might have gotten it from  her as well. That kinda bugs me. I know that those environments are little petry dishes, but it's so blatantly obvious that it makes me a little angry. I had been keeping her from school the week before the second infusion as I couldn't get anything or the whole thing would be a waste, a $10,000 waste as well as my chance at getting healthier. Then there were two weeks of holidays for Spring Break. We've managed to stay healthy for a long time while the world around is sniffling... then off she goes to school on Monday and is sick by Wednesday. I just started coughing this morning but I believe now that I have no B cells, my immune response is slower. Hopefully this blows over soon and healing continues.

Woo hoo Rituximab!