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View Full Version : how many weggies is your WG doc treating?



Alysia
08-21-2013, 01:58 PM
Hi,
I went to my wg doc yesterday. (great improvement due to rtx but still no remission :crying: inflamtory process is still taking place in my nose. waiting for next rtx to help...)
I finally dared to ask him (after almost 5 years) how many weggies is he treating.
he said: "some" (what is his story, can he just say ?)
so I asked AGAIN: "how many ? 5? 10? 15 ?"
and he said "between 5 to 10".
I already know he is not so experienced but he is the best I can have, and he is also human and available.
I wonder how many weggies is your doc treating ?

pberggren1
08-21-2013, 02:16 PM
What is your ESR and CRP at hun?

pwc51
08-21-2013, 04:22 PM
HI Alysia, I believe my rheumy has about the same number as yours. I have implicit faith in him - he diagnosed me within minutes of my initial visit and has cared for me for the past 4 years. He finds 'us' interesting and when he goes to rheumy conferences he follows the vasculitis channels rather than the more 'routine' arthritis ones. He knows my interest too as I challenge him periodically, but he never takes offense!

Pete
08-21-2013, 10:31 PM
Dr Villa Forte said the Cleveland Clinic sees about 700 weggies.

Alysia
08-22-2013, 01:55 AM
What is your ESR and CRP at hun?

Hi Phil, my CRP & ESR are ok. he saw inflamation in the sinus CT. thanks :hug2:

pberggren1
08-22-2013, 06:05 AM
My old doc had well over 1,000 Weggies and prob over 2,000 Vascis total. My new doc only has seen about 30 Weggies so far.

annekat
08-22-2013, 07:37 AM
Alysia, my doc sees fewer Weggies than yours does.

Debbie C
08-22-2013, 10:36 AM
Hi Alysia, glad to here the rtx is helping,hopefully the next round will do the trick. At least your numbers are coming back good. I don't know why your dr. was being so evasive on telling you how many patients he has with wg unless he didn't want you to know about his experience. But he seems to be doing good with you. Maybe you might be able to see another person in the waiting room. Praying you continue to get better:hug1:

Ruotsi1
08-22-2013, 02:52 PM
My doc says she has >20 WG pt's but didn't have an exact number. I feel confident in her treatment plan and she regularly talks with my Nephrologist and Pulmonologist which is encouraging to me. I definitely don't think she is a specialist, but she does her research and told me on my first visit she treated WG's "aggressively."

pberggren1
08-22-2013, 03:05 PM
Why don't you think your doc is a specialist Ruotsi1? Never heard of a GP having that many Weggies and not being a specialist.

Ruotsi1
08-22-2013, 03:10 PM
I am we at this WG thing and I just thought a specialist would have a lot more than 20-30. Not sure why... I do feel comfortable with my doc and confident in her knowledge, so I guess that's all hat matters.

Ruotsi1
08-22-2013, 03:11 PM
And she's a rheumatologist vs a GP (assuming GP is general practitioner).

annekat
08-22-2013, 03:14 PM
Why don't you think your doc is a specialist Ruotsi1? Never heard of a GP having that many Weggies and not being a specialist. Here it is coming down to the definition of a specialist. There's been talk on here in the past about docs needing to have seen something like 100 WG patients or more before they can be considered specialists, and the implication has been that no one who isn't on the VF specialist list is a specialist. But I agree with you Phil, that a doc who has successfully treated 20- 50 WG patients or more could be considered a specialist. Maybe not a TOP specialist, but a specialist. After all, how often does a doc get to treat WG, and after that many, he or she would know a lot about it, a lot more than most rheumatologists and other docs.

annekat
08-22-2013, 03:18 PM
I am we at this WG thing and I just thought a specialist would have a lot more than 20-30. Not sure why... I do feel comfortable with my doc and confident in her knowledge, so I guess that's all hat matters. I think it is important to have confidence in our docs and I would have confidence in someone who had treated that many WG patients. True the top specialists have seen a lot more than that. But we can't all go to those, and it is important to know about docs with considerable WG experience who might be accessible to us. These docs can always consult with top specialists if they need to, and they should be more than willing to.

pberggren1
08-22-2013, 03:42 PM
I am we at this WG thing and I just thought a specialist would have a lot more than 20-30. Not sure why... I do feel comfortable with my doc and confident in her knowledge, so I guess that's all hat matters.

I see what you mean now. Ya, she would not be a Wegs specialist per say, but at least she does have some experience.

whatthewhat
08-24-2013, 12:53 AM
Went to the rheumy clinic yesterday for an appt for our daughter (pediatric rheumatology team at Children's hospital Los Angeles) and Dr. Reiff said they have 18-20 patients with active Wegs (more in remission.)

drz
08-24-2013, 08:11 AM
I doubt if everyone who might have expertise treating Wegs wants to be listed on the Vasculitis Website. I think part of being on there conveys a willingness to do free consultations too from what I read about the web site. Some people might feel they want a balance and variety of other patients too so might not want to attract more Weg patients than they already have or naturally get without advertising for more.

pberggren1
08-24-2013, 08:12 AM
That's a good point drz. I will ask my doc about this next month.

annekat
08-24-2013, 08:26 AM
I, too, think this is a very good point, drz. Part of being associated with a major center may be willingness to do consultations, etc. In any case, this point of view would imply that there might well be a lot more good and experienced Wegs doctors out there. That is why Andrew's idea is such a good one, of us having a database of Wegs doctors that we feel are good or even excellent.

pberggren1
08-24-2013, 08:33 AM
Consultations work a bit differently here in Canada. I don't think docs here do consults for free and if they do it is very rare. I know my doc did a couple consults for patients that were not his for other docs far away but he did get paid for it. It was just a one time thing.

RudiK
08-24-2013, 11:26 AM
My primary doc, she is a doc for internal meds, says she has seen about 20 vasculitis patients in her last 10 years. Even so, she diagnosed me (or better predicted my illness) correctly within 30 minutes. My nephrologist ( a clinic with six doctors) have always between 6 to 10 vasculitis patients in their care.

annekat
08-24-2013, 12:50 PM
My primary doc, she is a doc for internal meds, says she has seen about 20 vasculitis patients in her last 10 years. Even so, she diagnosed me (or better predicted my illness) correctly within 30 minutes. My nephrologist ( a clinic with six doctors) have always between 6 to 10 vasculitis patients in their care. To me, these kind of figures are acceptable. These docs can always consult with those VF recognized specialists if they need to. I would be glad to have a competent doc who has seen that many vasculitis patients. My doc is competent, but he has not seen anywhere near that many patients. Of course, they all need to start somewhere.... Even Dr. Carol Langford at one time had only seen one vasculitis patient, I presume.