Rituximab Round Two

[DEE]

glad to hear you are doing well Sangye DEEx

[Sangye]

Sangye, so you received four infusions of the RTX within a month? I am wondering if I only got one treatment of RTX ....if my sinus ( taste only 50%, nose running on/off and sinus pressure) issues would disappear? What are your thoughts?

I have no idea, Elephant. I know rtx works great for refractory (ie non-responsive) Wegs like what I've had. My lungs hemorrhage, I get severe joint pain and profound fatigue and weakness. Those are my main symptoms that nothing else was able to control.

I think you should definitely ask Dr Langford. I've only heard of 2 rtx protocols. Both are done in one month: once a week for 4 weeks, or every other week for a total of two infusions.

[Lola]

Sangye, I am really, really happy to hear that you are feeling better - finally! It's been a long, hard struggle for you, and you deserve to be finally turning the corner.

I am feeling stronger, as well. I attribute most of that to the rituximab, but also, like you - to reduction of the prednisone. I am at 10mg and getting ready to cut 1 mg. in a few weeks. First, there are some stressful things coming up and I am just recovering from a nasty chest cold. Very scary at the time.

Next rituximab the middle of July.

[Brooke]

Yay Sangye! I hope you continue to feel great! Nothing is better than having the energy to do our activities of daily living!!!

[Doug]

...just don't get rambunctious and over do it, Sangye. There! My nagging is taken care of for today!

[Sangye]

After feeling pretty poopy yesterday and the day before, I'm feeling pretty good again today. It's my first day at 0.75mg pred--hooray!

[elephant]

I am smiling Sangye, so happy! I think it is possible for that walk to the beach!

[Brooke]

Whoohoo Sangye!! How long will you be on 0.75 mg of pred? Then what do you go to? Glad you are doing well!
I am starting at 15 mg today, I will let you know how that goes.
Do you know if a majority of people that have done Rituxan need more than one round (four infusions for me)? Or will I just have to see how I am doing in six months?
Do you know how close you can get the infusions if needed? For example every four months? Or does it have to be six months?

[Sangye]

I'll probably stay at 0.75mg pred for another 2 or 3 days. I stay at each new level for 4-5 days, making sure any new symptoms calm down again. I stayed at 3.0 mg for 11 days, though-- it took awhile to get stable at that dose.

I have no idea on stats for rtx use. My Wegs doc said they usually do it no sooner than every 6 months and really like to keep it to annually if possible. I've seen a few people repeat at 4 months but I think that's usually for more severe disease. He's told me it's best to keep the use to a minimum as much as possible-- each time you use it raises the likelihood of your body developing an allergy to it.

The reason for not doing it sooner than 6 months is that rtx destroys all B cells for 6-9 months.

[Brooke]

Thanks Sangye. I had blood work done after my infusions, I think the order was for T19 or T20? I haven't heard back, do you know what test that is for?
I know they had to send it out of state to be checked.