Mayo Visit

**Sangye** · 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.

**Brooke** · 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.

**jtausan** · 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

**Sangye** · 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.

**RCOSSIO** · 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?

**Brooke** · 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.

**Brooke** · 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.

**Sangye** · 08-19-2011, 01:08 PM

Sounds like a good visit, Brooke.

**Brooke** · 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.