Tomorrow Is A Big Day

Tomorrow we head to Ann Arbor for the first time in 2 months. Haven't been able to say that in a long time! We're going to talk to Dr. Teener first (I have a ton of questions, well 20 to be exact) about the Rituxan treatment....I spent most of the day yesterday studying stuff about it...

I now know way more about cellular immunology than I ever thought I would...but it makes sense in an odd way.

Plasmapheresis takes antibodies out of my blood by removing the plasma and putting synthetic plasma from "normal" people, so the symptoms are alleviated. But as soon as the treatment is done, my body continues to produce antibodies.

Rituxan works on a cellular level, destroying B-cells (we have T-cells and B-cells in our immune system) therefore the possibility of medical remission is a very real one. If the B-cells are the ones that are out of control, and the Rituxan wipes them out, no more MG. Theoretically anyway.

I think the best thing I found out about this treatment is that is seems to work best on MY kind of MG. YAY! AND the incidence of PML is really, really low. In fact, I couldn't find any documented cases of PML in someone with MG who was treated with Rituximab (Rituxan).

What I am asking for specific prayer against other than the PML (Progressive multifocal leukoencephalopathy) is that Rituxan can make some crazy things happen because it works at the cellular level. One concern is the varicella zoster virus (chicken pox and shingles). Rituxan can like "reawaken" or whatever dead viruses in your body...so I could get shingles. But I won't. I'm just saying. Ya'll can pray against that.

I've also been exposed to TB (in 1999); I never GOT TB, and was treated for it anyway. But I do have a scar bubble in my lung that is encapsulating a TB germ....But again, TB seems to be one of the things Rituxan WON'T reawaken.

Anywho. I will keep you posted. Probably won't post tomorrow as I am having plasmapheresis as well. Going to see if that gives me any kind of pick-me-up. Thanks for your prayers!!

I Think Cyclosporine Was Made By HMO's

Just like prednisone. Looks good at first. Sounds great at first. May even save your life...and then. The side effects kick in. Right now, the cyclosporine is causing my blood sugar to be RIDICULOUSLY high. Like WAY high. Higher than prednisone unless I'm on 30mgs or more of the Prednisone. I have almost constant cramping in my hands now, my calves are ready to seize up any minute...I've had a headache since I started taking it...I feel like crap. But I can breathe. So is that the trade off? I'm waiting for my neurologist to call. I'm ready to quit taking the stupid stuff, so unless he has a REEEAALLLLLY good reason not to, I'm done.

Some folks won't be happy because they think I give up when things "take work." Well, I'm not going to be in pain 24/7 and go blind from high blood sugar because they think I give up too easily. Let them live like me for one day.

Anywho. He's a funny that I saw a loooooong time ago, and thought it was appropriate for the way I feel right now:


And God populated the earth with broccoli and cauliflower and spinach and green and yellow vegetables of all kinds, so Man and Woman would live long and healthy lives.

And Satan created McDonald's. And McDonald's brought forth the 99-cent double-cheeseburger. And Satan said to Man, "You want fries with that?"

And Man said, "Super size them." And Man gained pounds.

And God created the healthful yogurt, that woman might keep her figure that man found so fair.

And Satan froze the yogurt, and he brought forth chocolate, nuts and brightly colored sprinkle candy to put on the yogurt. And woman gained pounds.

And God said, "Try my crispy fresh salad."

And Satan brought forth creamy dressings, bacon bits, and shredded cheese.

And there was ice cream for dessert. And woman gained pounds.

And God said, "I have sent your heart healthy vegetables and olive oil with which to cook them."

And Satan brought forth chicken-fried steak from Cracker Barrel so big it needed its own platter. And Man gained pounds, and his bad cholesterol went through the roof.

And God brought forth running shoes, and Man resolved to lose those extra pounds.

And Satan brought forth cable TV with remote control so Man would not have to toil to change channels between ESPN and ESPN2. And Man gained pounds.

And God said, "You're running up the score, Devil." And God brought forth the potato, a vegetable naturally low in fat and brimming with nutrition.

And Satan peeled off the healthful skin and sliced the starchy center into chips and deep-fat fried them. And he created sour cream dip also.

And Man clutched his remote control and ate the potato chips swaddled in cholesterol. And Satan saw and said, "It is good."

And Man went into cardiac arrest.

And God sighed, and created quadruple bypass surgery, angioplasties, and stints . . . . .

And Satan created HMOs...