View Full Version : Dr. Villa-Forte

01-11-2015, 06:00 PM
Little background: dx'd July 2013, 6 mo of cyclo, pred from 60 down to 10, and back up again, currently at 6; Rituxan in sept/October 2014 (2 doses/ 2 wks apart ). Saw dr. Villa forte for the first time August 2014 after finding a new lung nodule on chest X-ray. Have lung, kidney, sinus involvement all stable now. Currently on Imuran, 6mg pred, and bactrim.

I love my rheumy but was looking for a specialist opinion when I saw dr. Villa forte. Was very impressed with her, she's difficult to get a hold of, but I know she is incredibly busy. Have not been able to connect my local rheumy w/ her via phone, only communication has been my initial note completed at Cleveland clinic.

Wondering what others experience has been. I live in Washington state. How often should I follow up with her? I was expecting her to speak w/ my local rheumy (as in, make it a priority) is that unrealistic? Last time we spoke I asked what I should expect as I continue to wean of pred (should I be looking for specific symptoms). Her response was "you're responding well to meds, you shouldn't expect anything but to be healthy and happy." (I appreciate the positive, but looking for more direction.)

For those of us who have gone to see a specialist, how often do you follow up? In person? Via email or phine, etc.


01-11-2015, 07:32 PM
Dr villa forte has been mentioned so much that she must be overwhelmed with calls.

The specialist I saw is at the vasc center at the uni of Utah med school. His name is curry Koening. I highly recommend him. Whenever I sent an email with a question, I'd often have an answer back in hours. Great place and great doctors!!
click here (http://healthcare.utah.edu/fad/mddetail.php?physicianID=u0221591)

01-12-2015, 01:21 AM
I do go to a specialist in Boston and hadn't seen him in at least two years, but had kept quarterly appointments with PCP. When CRP and PR3 climbed to uncomfortable levels I made appointment with Rheumatologist. Now seeing him quarterly also. So I actually see a Doctor every month and a half. When levels go back down I am sure will go back to just PCP.

01-12-2015, 02:26 AM
I'm one of Dr Villa Forte's patients, and I consider myself fortunate.

I live a little over two hours drive from Cleveland Clinic. Thus, I could get there pretty quickly if a major flare requiring her to treat me would happen.

I realized early on that communication between Dr Villa Forte and my docs at Ohio State was going to be problematic. Therefore, I act as the communications link between them. I get a written "after visit summary" from her. I forward it to my PCP or other specialist when required. This is how I handled getting my rituximab infusions done at OSU instead of driving to Cleveland for them. My PCP orders the monthly labs Dr Villa Forte wants. He posts them to MyChart, and I send a copy to her. This has worked well.

I have only called her office twice, and she has usually responded either by the end of her day (she once called me back at about 8 pm) or the next day. When I e-mail her, she usually responds within a couple of days, and I'm fine with that.

I only need to see her every six months now.

I hope this info is useful. If you have more questions, PM me.

01-12-2015, 03:49 AM
Thanks Pete, I feel very fortunate as well to have been able to travel and see her., sure wish she was in,y 2 hrs from me. I have been the one passing on communication to my local rheumy and that has worked fine. I guess in my mind I was hoping the two docs would be able to connect. I work at a hospital and understand how busy the docs are, but I also see how they work. (I am pretty particular about the docs I have).

Renidrag - I follow up monthly with my rheumy (I have labs done monthly), and I follow up with my Pulmonologist and nephrologist quarterly.

vdub - I have heard a lot about Dr. Koenig as well. I think if I didn't feel so comfortable with my local rheumy, I would definitely need a specialist closer.


01-12-2015, 04:22 AM
Your drs can consult for free with vasculitis specialists via the vasculitis foundation here
VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/)