Need some direction...

[Ruotsi1]

I don't post very often, but I read through the posts all of the time.

Quick background: Dx'd July 2013. Currenlty on 150mg Imuran, 15 mg Prednisone, Bactrim every other day, and 20 mg Lisinopril 2x/day. Kidney labs went high right after diagnosis (currenlty creatinine ranges 1.1-1.3), completed 6 months of Cytoxin infusions (finished Dec. 2013). CRP normal, ANCA slightly elevated (don't know exact number), Sed rate recently jumped from 42 to 68 (was down to 10 mg Pred at the time, rheumy increased me back to 15 mg.)

I have discussed going to Clevenland Clinic w/ my rheumy. My rheumy is going to a conference by Dr. Langford in November and has said she would like to "present my case" to her (and possibly save me a trip to Cleveland. I live in Washington State.)

My rheumy has told me we're at a point that I am not getting worse, but I am not getting better, either. We have started discussing the possiblity of Rituximab infusions.

Suggestions, directions, guidance would all be appreciated. I feel good right now. Incredibly ready to be off of Prednisone.

Another twist is we may be relocating to Boise, Idaho, so that means finding new docs. Any suggestions for rheumy, pulmonologist, renal, and ENT docs in Boise, Idaho.

Thanks in advance!!
Angela

[Pete]

If I was you, I'd ask my doc to "present" your case to Dr Langford ASAP. If you're just hanging out in yuckeyville, you need help now, not five months from now.

Can't help you with docs in Boise. Hope the move goes smoothly.

[marylz]

Hi Angela. I'd have to say i agree with Pete. Personally, I had 8 rounds of CTX , then started RTX. I have had 1 dose (4weekly infusions) and feel much better. I'm now considered in medically induced remission!! I am tapering my pred and am now down to 7.5 and I'm scheduled for next RTX in August. Good luck with your treatment!

[Ruotsi1]

Thank you for ghee replies. I am actually feeling good, but my labs are showing different. That is the confusing part for me. I am pretty sure if I told my rheumy I wanted to start rituximab we'd get the ball rolling fast.

[vdub]

You must be on the west side. I don't recall any women rhuemys in Spokane.

After reading this post, I would get ref to UofU Vasc Center. Dr Curry Koening is the gentleman to see. He came from the Cleveland Clinic to start the program there.

Vasculitis Clinic - - - University of Utah Health Care - Salt Lake City, Utah (http://healthcare.utah.edu/geninternalmedicine/rheumatology/vasculitis/)

[Ruotsi1]

SLC would be a much easier trip than Cleveland. Is Dr. Koenig as highly recommended as Dr. Langford and Dr Villa-Forte? By the way, I am on the west side, rheumy is in Tacoma.

[vdub]

Koening is simply outstanding and if he knows you're coming from a distance, he'll get any additional docs involved within hours of the initial visit. I had 4 appts all within 2 days after the initial and 5th for an out-brief. They really ran me through the mill. They have RV parking with water and 30amps if you are so inclined. We stayed at Hill AFB, tho.