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View Full Version : URGENT- which hospitals & docs best for Wegener's in California, Nevada or Western US



Redbecca
05-25-2010, 08:09 AM
A loved one is sick and in a DCU. Diagnosed with Wegener's 5 years ago, went into remission about 1-2 years ago. Had mild diarrhea for 9+ months, then diagnosed with CMV cytomegalovirus then put onto anti-viral meds about 1 month ago. (CMV is common in 50-70% of population ... but bad if your immune system is compromised).

He has been in & out of ER with extended hospital stays since March 1, 2010. In the last month has been regularly running high fevers, not 100% coherent. Has been on Vancomycin for the last month. Is on 3 other antibiotics also now. They lowered the meds for Wegener's to try to help his immune system fight back more.

Now, they think he has pneumnia and endocarditis (infection in lining of heart tissue). He's vomitting, running high fevers, and we think this might all be related to the Wegener's but there is no one who can figure this out in Chico. Too small of a town / hospital for this. We want to get him transfered to a better hospital & doc. Where shoudl we try to get him transfered? UCSF, Stanford, UCDavis, CPMC??

Who knows which hospitals & docs have seen the most Wegener's patients in California / Nevada or Western US?

Are there any Wegener's specialists in SF, bay area, Sacramento or nearby?

elephant
05-25-2010, 08:20 AM
Go under the vasculitis foundation. Sorry I can't help you. Their our four Wegener specialist..Cleveland Clinic in Ohio, Mayo in Minnesota, John Hopkins University....forgot the other one NIH??? You might want to call them and mabey get info.
Sangye might know something.
Sorry you guys are going thru this. Did any of the doctors try to call a Wegeners Specialist? They can..

Sangye
05-25-2010, 12:28 PM
The other is Boston University. I don't know of any Wegs specialists out that way. If you can't transfer him out of state to a Vasculitis center, get him to a major university hospital and ask for them to consult with a VF doctor. Don't let them go it alone. They need a VF doc on the case.

Redbecca
05-26-2010, 01:47 AM
I contacted the Vasculitis Foundation and they suggested we try to contact:

Sharon Chung, M.D., M.A.S.
University of California
374 Parnassus Ave. Box 0500
San Francisco, CA
[email protected] ([email protected])
415-514-1673

Does anyone in the forum have experience working with Dr. Sharon Chung? Do you know which hospital in the bay area she might see patients in? Would it be UCSF?

Redbecca
05-26-2010, 01:48 AM
Now I feel kind of silly, I see in the email signature that it is indeed UCSF.

Have any of you out there worked with Dr. Sharon Chung for your Wegener's?

Lola
05-26-2010, 06:40 AM
For what it's worth, I remember looking up clinical trial sites for the RAVE study - comparing Rituxan and Cytoxan. I was interested in the San Francisco site.

Looked it up: Here is the Principal Investigator's name. I would think that in order to qualify to be one of the researchers, a physician would need to be able to guarantee a fairly substantial number of potential patients. (I used to be a cliical research coordinator.)

John C. Davis, Jr., MD, MPH
U of California/ San Francisco
415-502-5278.

andrew
06-02-2010, 08:29 PM
Redbecca
I got the following message from a visitor that wanted to help but can't log in.

I want to help Redbecca. Redbecca has the loved one having bad problems and was looking for hospitals & doctors in the west. I cannot help with this but I can perhaps help. Is the person taking methotrexate? I was taking
methotrexate and had many problems. I was also twice diagnosed with pneumonia. It was finally proven to be a reaction to methotrexate. I know of others who have had reactions to it. When I was taken off methotrexate, I was fine once more! Hope this helps.
Carolyn Landry

Redbecca
06-05-2010, 09:22 AM
Thanks for the note. He is not taking methotrexate and I do not think he's been on that drug at all in the time that all these problems have occurred.

So far the doctors, both in Chico and at CPMC do not think that his complications are from his Wegener's. They believe his immune system is simply so low that he's catching everything and anything and getting very sick.

We're still on the lookout for a good Wegener's doc (by good I mean someone who has had or has a significant number of Wegener's patients) in the Sacramento area.

Does anyone know which Reumatologists at UC Davis have seen the most Wegener's patients (or if not the 'most' then several Wegener's patients)?

Jack
06-05-2010, 06:32 PM
When I see a Wegener's patient being filled with antibiotics that don't work the alarm bells ring! I would suspect, as you seem to, that this is an uncontrolled flare up that needs specialist attention.
I'm afraid I can't help with a recommendation for a doc who knows the disease. :(
Hope you find one soon.

pberggren1
06-05-2010, 07:23 PM
Redbecca,

There is only one Wegs or Vasculitis consultant listed in the VF newsletter. Dr. Sharon Chung at the University of California - San Francisco, Division of Rheumatology, San Francisco, Tel: 415-514-1673

I hope this helps. Sacramento looks like it is about a 2 to 3 hour drive from San Francisco.

Take Care,
Phil Berggren

Sangye
06-05-2010, 11:20 PM
Redbecca, did you try the two names listed here? I think you're going to have to travel. I'm with Jack-- this sounds like Wegs, not infection. Especially because after they lowered his Wegs drugs he developed a mysterious lung "infection" and heart involvement.

ranpar01
06-22-2010, 09:17 AM
A list of top Wegener's hospitals and the doctor's in each are listed here: Best Hospitals for Wegener's (http://www.wegenersdisease.org/Wegeners_hospitals.html)

MyerscoughClan
10-16-2010, 08:55 AM
Not sure how far you are willilng to drive, but my daughter has GREAT doctors here in Orange County, CA. She was diagnosed at 15 and being treated at CHOC in Orange where she almost died because they knew so little about this disease. Her ENT got me in touch with a wonderful Pulminary doctor who in turn got me in touch with a wonderful Rheumy & they saved her life, she is now 20 and in remission for the past 3 years.

GOOD LUCK!!!

ENT - Dr. Robert del Junco - Orange, CA -St. Josephs
Pulm - Dr. Henri Colt & Tim Murgu- Orange, CA - UCI
Rheum - Dr. Desai - Orange, CA UCI

elephant
10-16-2010, 09:58 AM
He MyerscoughtClan, that is wonderful you daughter is doing good. It's nice to hear when someone goes in remission.

andrew
10-16-2010, 02:11 PM
Hey Redbecca
I got this message from someone that's currently having issues logging in but wanted to contribute:


Please convey this message to Redbecca. Dr. Sharon Chung and UCSF is an excellent Doctor. She is the first of many many that diagnosed me with Wegener's.
I have only seen her once and am only on Pred.
Dr. Chung takes a lot of time and explains everything to you.

I am very pleased that I found her. The town of Chico is not that far from UCSF. If Redbecca can get her GP or ENT to make the appointment for her, they will get right in. Only took me one week after my ENT called.
Hope this helps.
Carol in CA

flana
11-01-2010, 05:49 AM
Hi Rebecca, did you finally find a Weg Dr. in the sac area? I have been seeing Dr. Paul J. Utz at Stanfords as a secondary. My primary has been Dr. Shapiro in the sac area. Him and Dr. Wiesner work together at Sacramento Rheumatology. Dr. Shapiro is very conventional. I was diagnosed with WG in April 2009, and on cytoxan and pred since then. However I am still on the Cytoxan as he is lowering the dose very slowly. I am only now on Cytoxan at 100mg from 133mg and hope to be off it by early next year. of course Imuran is the drug of choice for maintainance.

elephant
11-01-2010, 06:32 AM
Flana, how come your Rheumatologist didn't switch you to imuran, cellcept, or methotrexate? Just curious. Are you off prednisone?

Sangye
11-01-2010, 09:31 AM
Hi Rebecca, did you finally find a Weg Dr. in the sac area? I have been seeing Dr. Paul J. Utz at Stanfords as a secondary. My primary has been Dr. Shapiro in the sac area. Him and Dr. Wiesner work together at Sacramento Rheumatology. Dr. Shapiro is very conventional. I was diagnosed with WG in April 2009, and on cytoxan and pred since then. However I am still on the Cytoxan as he is lowering the dose very slowly. I am only now on Cytoxan at 100mg from 133mg and hope to be off it by early next year. of course Imuran is the drug of choice for maintainance.
I'm sorry... I have to say that any doctor who would keep a patient on ctx that long does not know how to treat Wegs properly. That's not someone I'd refer a fellow Weggie to. Keeping a Weggie on ctx for over a year is far from the standard of care, so he isn't a conventional doc, but rather an ill-informed one.

pberggren1
11-01-2010, 12:24 PM
I have to agree with Sangye 100%. I have a Wegs Specialist and he says he would not keep patients on ctx for more than 3 months unless absolutely neccessary.

Jack
11-01-2010, 08:35 PM
I agree with the above. I believe best practice is to limit ctx to six months and extend to twelve in exceptional circumstances. It is a dangerous drug with the possibility of serious long term side effects that do not become apparent for many years to come. You need to get off it now or, if you are not stable, change medication.

JanW
11-02-2010, 04:56 AM
I have to agree with the others, and when I was at the symposium I heard people saying no more than three months on ctx -- don't know if that has become to offical 'standard of care' though.

I also met (I think unfortunately), patients who had been on ctx for a few years and who were extremely reluctant to give it up as they believed it was keeping them alive and not hurting them.

flana
11-02-2010, 10:42 AM
I agree with y'al... but that is all I have in the west coast. :crying: I am looking for a WG Dr. as well. There is an apparent Weg specialist at Stanford, but I will confirm this when I meet her (or do some more research) in Dec. Her name is Conielia Weyand. She was at Mayo before she joined Stanford. I am rather surprised at the lack of tranction on WG in the west coast despite it having one of the best institutes in the US.

flana
11-02-2010, 10:44 AM
Flana, how come your Rheumatologist didn't switch you to imuran, cellcept, or methotrexate? Just curious. Are you off prednisone?

Elephant hello, I am on 100mg Imuran and 100mg Cytox. Plan is to taper the Cytox and up the Imuran dosage.

flana
11-02-2010, 10:46 AM
I have to agree with the others, and when I was at the symposium I heard people saying no more than three months on ctx -- don't know if that has become to offical 'standard of care' though.

I also met (I think unfortunately), patients who had been on ctx for a few years and who were extremely reluctant to give it up as they believed it was keeping them alive and not hurting them.

Well keeping one for more than 6months on Cytox has some real bad side effects I am told... bone marrow cancer/bladder cancer and what not - guaranteed?

JanW
11-02-2010, 11:29 AM
The doc you cite is not a WG specialist -- I saw her speak at the Symposium and she in fact specializes in large cell vasculitis -- I think she's done groundbreaking research in temporal arthritis, if I'm not mistaken -- and that's what she was there to speak about.

Closest vasculitis center to you would be Cedar Sinai in SoCal (but I'm not sure if that's up and running yet) or University of Utah (which is).

This disease is so rare that there is no rhyme or reason to why the specialists are where they are. I'm sure the only reason my ENT is here is because he is from NYC, or he would be with his former colleagues from NIH who are now all in Cleveland.

flana
11-02-2010, 12:30 PM
That's a real bummer!. I was really expecting her to be a Weg specialist. :( I guess I will need to make an appt. in JH. My sister lives in NJ, I think this is not a bad proposition, but then i cannot go there often.

Sangye
11-02-2010, 01:26 PM
Raj, you wouldn't have to go there much, just establish yourself as a patient and have them oversee your care.

Jan, isn't Dr Chung in California a Wegs doc?

pberggren1
11-02-2010, 06:25 PM
Yes, Dr. Sharon Chung is listed with the VF as one of their Medical Consultants at U of C San Francisco.

Jack
11-02-2010, 09:19 PM
Well keeping one for more than 6months on Cytox has some real bad side effects I am told... bone marrow cancer/bladder cancer and what not - guaranteed?
Extract from a 2004 paper on the subject -

Results: The median cumulative doses of cyclophosphamide among cases (n = 11) and controls (n = 25) were 113 g and 25 g, respectively. The risk of bladder cancer doubled for every 10 g increment in cyclophosphamide (OR = 2.0, 95% confidence interval (CI) 0.8 to 4.9). Treatment duration longer than 1 year was associated with an eightfold increased risk (OR = 7.7, 95% CI 0.9 to 69). The absolute risk for bladder cancer in the cohort reached 10% 16 years after diagnosis of Wegener's granulomatosis, and a history of bladder cancer was (non-significantly) twice as common as expected at the time of diagnosis of Wegener's granulomatosis.
Conclusion: The results indicate a dose-response relationship between cyclophosphamide and the risk of bladder cancer, high cumulative risks in the entire cohort, and also the possibility of risk factors operating even before Wegener's granulomatosis.

JanW
11-02-2010, 11:52 PM
Yep, I had forgotten about Sharon Chung at UCSF, she's nice too, from what I hear.

I guess I was thinking more along the lines of a center -- I think UCSF has the rheumy, but I'm not sure how many others (ENT, pulmy, neph, etc.) see WG.

Obviously, because the conference was in CA I met plenty of Californians, but they really seemed to have a horrible, horrible time getting doctors to treat WG seriously. Honestly, some of the 'local' docs on the panels (not naming names) seemed way out of their depth compared to the Cleveland/Mayo/JHU/UNC/BU crew that dominated the Symposium. I spoke with more than one person whose doc refused to take them off ctx or even consider a non-medicated remission after significant periods of time of being symptom free.

Sangye
11-03-2010, 12:29 AM
It's heartbreaking to know the kind of lousy care some fellow Weggies are getting. Not to mention those that can't even afford to see docs because they're uninsured or underinsured. Thanks for clarifying about Dr Chung, Jan.

JanW
11-03-2010, 04:34 AM
It was definitely the thing that Weggies complained about the most -- the ones from CA -- that there was no center there so even if you had a great rheumy, you might not get a very good ENT, even if most of your problems were in that area. I met a woman who gone to the last few conferences from SoCal, and her husband was the patient, and had WG for several years. He was in deep denial -- wouldn't even register for the conference or attend any of the sessions, and she said that they had already had a few docs 'fire' them because they questioned the quality of care (she raised one such incidence in an open session and you could see on the UNC's doc that she couldn't believe it -- although they never say anything against a fellow doc).

flana
12-12-2010, 05:57 PM
Not sure what to say... but my Rheumi from Stanford, said last week, that if it were one of his family members who had WG, he would go to Cornelia Weyand at Stanford, and referred her to as the World Weg Specialist.

Sangye
12-13-2010, 01:42 AM
Raj, not being familiar with Cornelia Weyand's name I did a quick online search. She seems to focus on giant cell arteritis and RA, not Wegs. Here's (http://med.stanford.edu/profiles/Cornelia_Weyand/;jsessionid=ACE25DDA2CD766AB0194B05BF768711C.tc-cap-02) her Stanford page. In a PubMed (published research) search of her name and Wegs, I only got one article about inflammatory diseases in general. Nothing on Wegs. (To compare, I did a similar search of Drs Seo, Hoffman, Langford, Merkel-- all well-known Wegs docs. They had 13-20 papers published in their names.) I did a similar search of past and ongoing research studies at ClinicalTrials.gov-- which lists every drug trial in the US. She wasn't listed under any clinical trials at all.

I think your rheumy is seriously off base referring to her as the World Wegs specialist when she hasn't even published one article about Wegs and isn't participating in any of the clinical trials. Is this the same guy who thinks it's okay to keep you on ctx for 2 years?

JanW
12-13-2010, 03:15 AM
I can do Sangye one better, Raj. I heard Weyand herself say that she is no specialist in WG, and defer questions about that topic while on a panel at the Symposium. It is quite right that she specializes in GC arteritis. I think the only WG specialist in NoCal is Sharon Chung, but she may be of a younger generation than Merkel, Seo and Langford...my sense is that she's an up-and-comer (this is still fine).

Sangye
12-13-2010, 09:29 AM
LOL Tell your rheumy to put that in his pipe and smoke it!

flana
12-13-2010, 04:54 PM
Is this the same guy who thinks it's okay to keep you on ctx for 2 years?

Thanks all...

Nah.. this is the one is Stanford (Dr. Utz), that has shared the same concern of me being on ctx for this long. I am not sure why he claims Weyand to be a WWS... I am also trying to secure an appt with Sharon Chung by EOY.

Oh and BTW they have been taking blood samples from me for some research that Dr. Utz has been funded for (ANCA associated Vasculitis).