Mayo Visit

[Brooke]

Hi,

I am leaving for Mayo tomorrow for a check up. My appt is on Wed, I will have blood and urine tests,
chest x-ray, breathing tests, then I see my pulmonologist.
Anyone have anything they would like me to ask my doctor?

[Psyborg]

I don't have anything right now. Just have a safe trip.

[Brooke]

Thank you

[Chris G]

Booke - I know that you've had 2 rtx treatments. I think the second one was done more as a preventative - not because you were having a recurrence of sympoms. Is that correct? The reason I ask is that my docs plan to do a 2nd rtx treatment on me automatically...... 6 months after the first one, which was in May. After that I don't know what my plan would be.

So I guess I'd like to know what your doctors' plans are for you going forward. Will they continue to be proactive and treat you without recurrence of symptoms? Or at this point will they wait to see if you can stay in remission without intervention. And WHY? I'd like to know the reasoning behind whatever the plan will be.

Are you on any other wg meds right now? Pred? mtx? aza? anything????

Also, is your wg limited to head and neck? Or did you have lung/kidney involvement too?

[DEE]

Hope things go well Brooke ,safe journey DEEx

[RudiK]

I hope you get good results, Brooke. Have a safe trip. Rudi K.

[Brooke]

I am for sure asking about future meds. The meds I am on currently are: Bactrim, Prilosec, and Symbicort Inhaler.
I believe I remember her saying that if I didn't do this last round of Rituxan, that she was going to put me on a maintenance drug. So I am wondering if that is her plan once my B-Cells come back. I guess I will find out
My Wegener's is Sinus and Bronchial and a little lung involvement

[Chris G]

I have had ear, throat, nose & sinus, and eye involvement. I'm looking forward to hearing what your doc's plan is. Good luck on Wednesday!!

[Palmyra]

Brooke,
I just posted you on another thread...do you mind me asking who your pulmy is at Mayo? Is this Rochester? My daughter has seen Ulrich Specks since 2006. I would LOVE for you to ask him/her, on what basis they schedule Rituxan infusions. Is it based symptomatically, based on B cell re-population...or what? I know every individual is different, and that is the conumdrum.

Best wishes to you,
Jane, mom of Ali, Crohn's'99, Weg'06

[elephant]

Have a pleasant visit and hope it goes well for you! Keep us posted.