View Full Version : Which specialist/clinic?

12-04-2010, 05:18 AM
I am trying to figure out which clinic/specialist to go to. I have been treated since March of 2009 by my local Rheumatologist and the pulmonary specialist at University of Washington. I have been treated w/ methotrexate and prednisone. My pulmonary test 2 wks ago showed a 20% decrease in oxygen absorption and they wanted to treat by increasing my prednisone. I am looking for another opinion and am wanting someone who specializes in this disease to consult. I am looking at Dr. Seo at John Hopkins, Dr. Specks at Mayo or Dr. Hoffman at Cleveland clinic. Any opinions? Is there an advantage to going to a major institution like Mayo? I don't want to get the run around or just be an "teaching case" in a clinic. What do you recommend??

12-04-2010, 06:58 AM
You are right to seek expert opinion and definitely right on about being a teaching case. It doesn't matter which of the VF docs you go to-- they're all outstanding. Mayo, Boston University and Johns Hopkins are the main centers. All provide excellent care, including the other specialists you'll need to consult. The wonderful thing about going to the big centers is that the specialists they send you to (eg pulmonologist) are the ones who see all the Weggies. So every one of the docs you see knows Wegs very well and already has a great working relationship with the main Wegs doc (rheumy) who will be overseeing your care.

12-04-2010, 11:12 AM
Thanks Sangye for the confirmation. I was feeling pretty confident w/ my care and am an RN but the recent news about my PFT was disturbing since I wasn't "feeling" any differently.
Any of you who go to Cleveland Clinic...do you have problems being linked up with specialists? I am leaning toward Dr. Langford but know that Mayo and JHU are large networks of specialists. Not so sure about the Cleveland Clinic.
Wish there was a center in Hawaii.. the Northeast in January is not very appealing- Brrr!

12-04-2010, 11:26 AM
They have quite a few specialists at the Cleveland Clinic as well. I believe there are about 8 Weggie specialists there.

12-04-2010, 11:51 AM
Mom of 3, Hi...I am a RN too and chose Dr Langford at the Cleveland Clinic and she is very good. The ones that Sangye stated are all good places.

12-05-2010, 02:59 AM
There is also a new vasculitis center at University of Utah -- I don't have the name of the doc, but you can go on the Vasculitis Foundation's website and find it I'm sure. If you are in Washington, that's probably closest to you.

Of the 3 you mentioned, all are terrific and I can add that having been to the VF Symposium in July, Peter Merkel at Boston is really beloved by his patients as well.

12-08-2010, 09:47 PM
I see Dr. Alexandria Villa-Forte at Cleveland Clinic, a rheumy and a WG specialist. I don't seem to have any problems getting an appt at any time. She is an amazing doctor and is very personable. She studied under Dr Hoffman and always takes her time with me. I was just there on Friday and she is changing my meds from Meth to Imuran. I went to CC for a second opinion and I am confident in the treatment that I am now getting.
Good luck to you,

12-11-2010, 06:36 PM
Thank you everyone for your help. I have an appointment w/Dr. Langford in February but am asking my local rheumy to do a physician to physician consult with her before the end of December. I am hoping she will.
The MD in Utah is Dr. Curry Koenig and Dr. Langfords receptionist mentioned him, said he trained at Cleveland. I might go there if my MD won't do a phone consult. The plane tickets to Cleveland are pricey and Utah is less so, but still more than I want to spend on this stupid disease.

12-11-2010, 06:39 PM
Jana, why did she change you from Meth to Imuron? How long where you on the meth before they decided it wasn't working? I have been on Methotrexate since April 09 and take 27.5mg SQ every week. I am also on prednisone, down to 10 mg but stuck there.

12-12-2010, 01:06 AM
Momof3, my local Rhuemy called Dr Langford before I went to see her, I was not doing well and so glad she called her. I am also glad I got to meet her too! I go to Cleveland Clinic once a year, I feel that since I am still taking a bunch of medicine for this disease I need to see her yearly. Hope all goes well and your doctor contacts Dr Langford soon.

12-12-2010, 02:04 AM
The plane tickets to Cleveland are pricey and Utah is less so, but still more than I want to spend on this stupid disease.
I understand.... Instead of thinking that you're spending the money on the disease, maybe think that you're spending it on your life. Makes it feel better, doesn't it? You are worth it. And you're the Momof3, which means you are 3 times more valuable. Get the best care for yourself. You deserve it. You'd do that for your kids, right? :smile1:

12-13-2010, 05:49 PM
Yes Sangye, you are right, I am worth it. I just get frustrated with the amount of time and now $$ I have to spend trying to battle this. I am tired and want a break, but just keep plugging along hopefully on the way to remission. I got a voice mail from my rheumy's nurse that they won't do a "second opinion" consult until I am seen by the other MD. I have an appointment with my local one in 2 weeks so will wait and talk with her. I think we are needing to decide if the methotrexate is working or not and if not what next. I was hoping Dr. Langford would be helpful with that.
There seems to be different thoughts on treatment, less toxic for long time or more toxic quickly and shorter. I think my MD was hoping for less toxic for long time but I am not ok with that if silent damage is happening. Problem is, it's silent so how do we know? It would be nice to trust that they know what they are doing, some of that is just being a nurse, we never trust doctors until they prove themselves.
Thanks for listening to my ramble.

12-13-2010, 10:08 PM
Momof 3, hoping you get to see Dr Langford soon, and she will let you know if your getting the appropriate treatment and might even add some other meds or other. When I went to see her she wanted me to check my urine with the dip sticks weekly to make sure my kidneys were not failing. At that time I was not in remission.
I understand how frustrating this is, I actually had family members come down here ( had to fly) and help me for a few weeks and at one time a couple of months.
You can ramble on as long as you like, we are here for you.

12-14-2010, 01:07 AM
Momof3 I think that a lot of the damage is not completely silent if you know what to look for. Some organ damage is, but if you are getting bloods and urine done frequently enough, there are lab values that can check for that. As you say, your recent PFT might indicate a problem. Then, as well, for weggies, a huge one is simply how you feel. Good physicians have a tremendous amount of respect for that (and bad ones are often the flip side, telling you that the 'numbers' look fine, so nothing could be wrong). With WG you really have to listen to your body and not live in a state of denial (hard I know). This has been easier for me having doctors that spring into action at the drop of a hat (e.g. when I had a rash -- that cleared up in about 10 days on its own -- my rheumy saw me the day after I called him and wanted me to book the derm the same day, even though he thought it wasn't WG related), so they really make me feel as though everything that happens to me is potentially very serious and needs to be fully checked out.

I hope you get in to see Dr. Langford or Koenig. I think you will be in much better hands with a specialist.

12-14-2010, 02:49 AM
I agree with all of the above, but I am concerned about your status as you wait for that appointment with Dr Langford. 20% decrease in lung function is significant.

My daughter sees Ulrich Specks at Mayo, as her initial symptoms were pulmonary and her local doc referred her there. All the clinics are 'huge', but tend to work on a collaborative model. We found Mayo to be very efficient, much more efficient than any other hospital I have ever seen, and you are not at all 'run around or a teaching case' at any of these institutions.

Good luck to you, and keep us posted

12-23-2010, 11:37 AM
OK, I have an appointment with Dr. Langford and also one with Dr. Cartin-Ceba at Mayo (he works w/Dr. Specks) for early February. I need to figure out how I want to coordinate with my local MD's. If I want to support the local rheumy w/ Dr. Langford or go to Dr. Cartin because my lungs are my affected site. I just want to be sure that what I am on for treatment is correct, and based on what I read on this site I don't think it it. I also want a plan for what to do if I have a flare as my local rheumy is very restrictive and turfs me off to my PCP if it isn't a scheduled appointment.
Anyway... thanks for all the support/help. I have the appointments made and will decide next week which one to keep and which one to cancel. Hopefully 2011 will be the year of remission and getting off the prednisone.
Merry Christmas everyone.

12-23-2010, 12:20 PM
Sangye will now take you off her "Nag Every Hour" list. :thumbsup:

12-23-2010, 02:02 PM
So happy to hear you are seeing Dr Langford, she is my doctor. You won't be disappointed!

12-27-2010, 12:11 AM

It is very hard to find a PCP that will not hold you in the group that they are in. They will bounce you back and forth within their own practices. I let my rheumy,a specialist in WGs drive. She coordinates all my care and my PCP gets letters explaining whats going on. the PCP doesn't really get the picture of WGs but at least she's not sending to pulmony's or onocologist in her group treating me for asthma or pneumonia anymore. I get my lab test locally and have them faxed to CC and occasionally they screw them up too. The only thing my PCP manages is all the regular drugs I was on before I was dx'd and sometimes she ask me why I am on those(ones she has rx me). So if you possibly can let the specialists manage your case. Wishing you all the best!

12-27-2010, 03:27 PM
I am also from WA, but on the dry side. I will have my first apt with Dr. Koening at the Univ. of Utah Vasculitis Center (http://medicine.utah.edu/internalmedicine/rheumatology/vasculitiscenter.htm) on 7Feb. Since I have pituitary involvement with the wegs, I will also be seeing a neruologist on 10Feb. I'm looking forward to it....

12-28-2010, 05:52 PM
I am also from WA, but on the dry side. I will have my first apt with Dr. Koening at the Univ. of Utah Vasculitis Center (http://medicine.utah.edu/internalmedicine/rheumatology/vasculitiscenter.htm) on 7Feb. Since I have pituitary involvement with the wegs, I will also be seeing a neruologist on 10Feb. I'm looking forward to it....

12-29-2010, 05:02 PM
This thread is broken. This is a test.

12-29-2010, 05:03 PM
Ok fixed now. Carry on.

12-30-2010, 01:51 AM
LOL I was wondering what was going on with it! Thanks Boss Man.