View Full Version : Mayo Visit

08-16-2011, 02:42 AM

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?

08-16-2011, 03:18 AM
I don't have anything right now. Just have a safe trip.

08-16-2011, 03:23 AM
Thank you:)

Chris G
08-16-2011, 03:35 AM
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?

08-16-2011, 04:01 AM
Hope things go well Brooke ,safe journey DEEx

08-16-2011, 05:01 AM
I hope you get good results, Brooke. Have a safe trip. Rudi K.

08-16-2011, 06:04 AM
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
08-16-2011, 06:52 AM
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!!

08-16-2011, 12:38 PM
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

08-16-2011, 01:00 PM
Have a pleasant visit and hope it goes well for you! Keep us posted.

08-16-2011, 01:18 PM
I know I had a question but I've forgotten! I hope your visit goes well and you get lots of good info and good news, too.

08-17-2011, 12:44 AM
I am going to Mayo Clinic in Rochester, MN. I see Dr. Karina Keogh - Pulmonologist.
As far as I know, she wouldn't re-treat with Rituxan until my B-Cells have returned. If the Rituxan didn't seem to be working, I think it would depend on how bad the flare was - if she would try Cytoxin, or pred or something else - I will ask her.
I am actually a little scared to go now because I started a cough a couple weeks ago, and now I think I may have a chest infection coming on. No blood, no short of breath, just wheezy in the chest area with green phlegm. I have to do breathing tests and I have a feeling they won't be my best readings since I have a cough. It would be nice to go there when I am feeling my best and get a better result with the breathing tests.

08-17-2011, 03:08 PM
Hi Brooke,
Good luck on your appointment. I'm going to just miss you
I go to Mayo next week . I start my first round of RTX. How did
The RTX go for you? Did you do it at mayo? I
Doing my first treatment there then the other 3 at home.
Did they put a port in for you? I really hope they do for me,
My veins seem to get sore real fast. Also, after the RTX did you
Catch a lot of things. Ie; colds, infections etc.? I'm worried about
That because ever since we upped my MTx to 25 mg I've been sick.
Chest infections, strep throat with Laryngitis, pink eye. Ugh it's so
Frustrating and I have missed a lot of work. I will have the RTX
Once per week for 4 weeks. I'm wondering if I should change my
Work schedule even more. It's just so hard to know.
Again, good luck on your tests and if you stay longer let me know I would
Like to meet up with you sometime.
Take care, Jodi

08-18-2011, 02:16 AM
Jodi, a port is not a good idea for a Weggie. Port infections are VERY common and can quickly become life-threatening. It's even worse since you're already having so much trouble with infections. (Which I hope clear up!)

I have terrible veins-- only 2 left that can take an IV and they don't always work. But no doctor has ever even suggested a port.

08-18-2011, 07:48 AM
Brooke...i never had RTX, I went from Cytoxan right to Cellcept. My question is when she said she wil put you on a maintenance drug, why CTX and not MTX or Cellcept?

08-19-2011, 12:46 AM
I am back from Mayo. My blood , Urine, Breathing tests and Chest X-Ray were all good:) She thinks I may have a sinus infection - I wasn't wheezy when she listened to my chest but I told her I am coughing up green gunk and I think it is from my sinuses dripping down. So I am on an antibiotic for 20 days - Azithromycin. Hopefully it works, she said if I get this again after I stop the antibiotic, I need to see ENT.
She also wants me to do another round of Rituxan once my B-Cells come back. She said since it has been working so well for me that she thinks one more time would be best. After that, we will see if I need a maintenance drug... I have to wait until my B-Cells come back to get Rituxan again because I have never had a positive anca so they can't go by that.
You can ask me more questions... I am at work now and have a little headache.

08-19-2011, 05:34 AM
Also, I am participating in the longitudinal study. This is a study about genetics. I just met with the cordinator and she had me fill out some paper work. I believe it follows you through 10 years. I will most likely do the option where I go to Mayo once a year rather than every 3 months (unless I'm having a flare). Yesterday, they took 15 tubes of blood from me and some urine.
She didn't tell me what the next visit would be like... don't know if I will meet with docs or just have more testing.

08-19-2011, 01:08 PM
Sounds like a good visit, Brooke. :smile1:

08-23-2011, 12:52 AM
I forgot to add, the doc wanted me to have an EKG. I did that in my home town, and it is normal.
I think something kept popping up on her computer about Azithromycin and Symbicort.... maybe that isn't the reason for the EKG, I'm not sure.
I asked her if there were any restrictions on excersise due to my subglottic stenosis and she said no :)
She also doesn't think that I need an echo done every year.
Those were 2 other questions I had asked her about.

08-23-2011, 03:13 AM
That's great, Brooke!

08-23-2011, 03:24 AM
Thanks Sangye:)
How have you been feeling? Do you think this round of Rituxan is working any better?
Random question:
Do you know what would be the best drug for a maintenance? By "best" I mean with the least side effects.
Just curious of future meds I may need...
I do know that some probably work better for others.

08-23-2011, 04:01 AM
It's really hard to tell how I'm doing rtx-wise because of the switch to hydrocortisone. We increased the dose the past couple days which definitely helped. But after just one day out yesterday I am really wiped out today-- more than normal. So is it the rtx not working or is it the HC dose? No way to tell right now.

I think the only choices for maintenance drugs are mtx, imuran and Cellcept. Mtx and imuran seem to be tolerated well as long as you aren't allergic. Cellcept causes diarrhea (mild to severe) in a large number of people but is otherwise tolerated well. It's very individual!