Way Sick

[drz]

drz.. what did your chest X-ray look like with the bleeding in your lungs what were some of your symptoms?

I don't know what the x-rays looked like. I just accepted the doctors word on whether they showed more bleeding or less bleeding. I think they could also generally hear it when they listen to my lungs. With bad bleeding i coughed up a cup or two of fresh blood which was pretty clear evidence. Milder bleeds might be only a teaspoon or two. Later on the main symptoms were increased fatigue and drop in hemoglobin. Sometimes this was quite rapid so they started giving transfusions as soon as we realized what was happening.

[Sangye]

My lungs sounded perfectly clear and my pulse oxygen was 100% (even at high altitude). When my lungs were completely full of blood I only had a little dry cough. In 2009 when they bled again I coughed up about a teaspoon. Apparently my lungs are stealth hemorrhagers.

[Bren]

Gosh you guys are all so awesome!
I felt terrible all day so wiped, the cold has loosen up in my lungs .. NO nose bleed today!!! but major crusting.. had a migraine, also. came home from work to try sleeping it off, but no luck...could someone please tell Mr Migraine he was not invited
I m so looking forward to see Dr Speck on the 28th like Lisa Marie hope they have something to get me back on my feet

[elephant]

Bren, I am so glad you are going to Dr Speck! If you get any worse please go to the ER. You will feel so relieved once you see him and you will be taken care of.

[DEE]

Sangye you have not given us an update on how you are doing lately hope things are going ok wiyj you DEE x

[Sangye]

Thanks for asking, Dee. I'm doing okay. Not great, but not awful. I still have a fair amount of joint pain. The rtx should start working in another 2 weeks. It made a huge difference not having the infusions weekly. I sure hope the 2-infusion protocol works as well as the 4 did.

[drz]

Gosh you guys are all so awesome!
I felt terrible all day so wiped, the cold has loosen up in my lungs .. NO nose bleed today!!! but major crusting.. had a migraine, also. came home from work to try sleeping it off, but no luck...could someone please tell Mr Migraine he was not invited
I m so looking forward to see Dr Speck on the 28th like Lisa Marie hope they have something to get me back on my feet

Bren:

Progress report please. Hope it went well!

[elephant]

Sangye, me too. Hoping all goes good in the RTX department.

[me2]

Sangye, I was hoping to be synchronized with your rtx treatments so we could compare progress but mine got delayed to check out possible lung infection. Good news- its not lung infection so I should be starting rtx soon.
My doc is perhaps not as well versed as yours but he is sometimes surprisingly good and I asked him AGAIN about the two vs four weeks protocol.
I did both some time ago. He was nice enough to let me request what I wanted- the four week.
He said the protocol is somewhat arbitrary at this point. He said that "Your B cells are gone so there really is no need to keep doing treatment."

I'll just have to take his word for it and the fact that this seems to be the accepted protocol now. It makes me think a little of the Cytoxan protocol and how aggressive it was 30 some years ago. Years of experience have allowed for refinement.
I hope you feel good way sooner than I do Sangye so you can tell funny stories about all the stuff that you are doing with your new found health and energy..

[Sangye]

Aww, that's really nice me2.

So you're doing the 4 infusion protocol? Dr Seo said some vasculitis centers started out doing 2 and some started with 4. They each kept doing what they knew. (JHU was a 4-infusion center, so that's why I had that protocol the last two times) But he said at this point they're all starting to see that both protocols give the same results. I guess that means the B cells are wiped out with only 2 infusions.

A good argument for doing the 2-infusion protocol is that it's 50% less exposure to the drug, therefore less chance to become allergic.

When is your starting date? I'm really glad to hear you don't have a lung infection!