Back from MAYO

[Sangye]

I'm so glad the rtx got paid for! It sounds like you're on the right track. You're lucky not to have side effects from the rtx-- I feel like I got run over.

I did my second round of rtx at 5 months instead of 6. I've heard of them doing them as early as 4 months, but that's not typical. Fingers crossed for good labs.

[Lola]

Thanks! Oh, I felt like I'd been hit by a truck and drug through a knot hole for 4 weeks. But I guess I'd expected that. I couldn't even lift my arms up to hold a book for reading for a week.

[elephant]

Lola that is great news that your insurance paid for it and should! Hoping for a quick recovery for you real soon.

[Sangye]

Yeah, that's exactly how I am! I can't even talk on my cellphone because I can't hold it up long enough. I had a 5-minute phone conversation today and my arm felt totally dead afterwards.

[Lightwarrior]

Yeah, that's exactly how I am! I can't even talk on my cellphone because I can't hold it up long enough. I had a 5-minute phone conversation today and my arm felt totally dead afterwards.

ooohh... I can relate...I've been in bed all day I was hoping I would be completely back to normal after 3 days of pulse IV steriods (can you imagine what an active fantasy life I must live in, even though I intellectualy know that lala land is not a real place). I have to chew small bites or my jaw gets tired, I hate to talk on the phone.

[Sangye]

Lightwarrior... you really do spend too much time in fantasy land! I hope you get stronger. Remember, major pred makes you feel like you can do more than you really can.

[Lightwarrior]

Lightwarrior... you really do spend too much time in fantasy land! I hope you get stronger. Remember, major pred makes you feel like you can do more than you really can.

that's why I'm freaked, after 3 days of 1000mg IV I should feel like I can do anything, at least breathe better. Instead, I'm feeling weak as a cat my back still hurts. May I have pleas have some cheese with my whine??

[Sangye]

I was the same way, even after pulse steroids. My body was too depleted to feel stronger due to the pred. I only noticed the effect on my mind and emotions.

The fact that pulse steroids have you feeling weaker means you are seriously wiped out by the Wegs, which is seriously active. I can't emphasize this enough. Your back is weak as a result of overall depletion-- those muscles shut down just like any other part of the body. Even your jaw muscles are fatiguing easily.

I kept working until I was diagnosed and put in the ICU with profound anemia and severe pulmonary hemorrhage. Like you I was so depleted by the time I started pred that not only did it weaken me further, but it set me up for many complications-- some immediate, some delayed. Those months depleted my adrenals to the degree where I have still not been able to recover and function-- 4 yrs later.

I don't know if you can hear this, Lightwarrior. I'm not sure anyone could have gotten through to me back then. But seeing you go through this is like reliving a nightmare for me. I've spent a lot of time wishing I could get a "do-over" of that period. I'm trying to keep you from going off the same cliff and regretting it later.

[Lola]

Lightwarrior, I have to agree with Sangye. I had to cut my work to 1/2 time last August because I was so very ill. Even that didn't help. I just got sicker.

I know there's no easy answer for you right now with the insurance problem. I just know that you would do so much better if you could somehow alter your work schedule, or take some time off.

[Brooke]

Sangye and Lola~

Are you feeling so sick due to the Rituximab or the steroids? Is everyones dose the same of iv steroids before getting the rituximab?