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Hi. I'm online and happy to answer your question today.
do you know of any specialists who are studying p.i.c?
I must admit that I am not familiar with that abbreviation.....do you have more information on what your wife's condition is called, or what part of the eye it is affecting?
punctate inner choriodopathy
inflammation in the back of the eye leading to blind spots in vision
Got it.....I've treated a number of cases of this condition but never abbreviated it that way :)
her doctor was treating her with cellcept and prednisone but found it to not be effective
do you know of any other way of treating this or doctors who are studying this and would have other options to treat her?
The differential diagnosis list for this condition is long and branching. Has your wife been evaluated by a retina specialist?
yes. she has been treating by two different retina specialists. one in new york - where we live and she travels to johns hopkins to see a specialist there who has been treating her
do you know of any eye doctors out there who are currently studying this condition and would have some new type of treatment
Dr. Watzke is the worlds leading expert on this condition. I was just trying to see where is is located now.......
Looks like he is currently at Oregon University in Portland, OR
ok. does he still see patients?
I don't think so as I'm having a lot of difficulty finding him anywhere but on the American Academy of Ophthalmology site.....
is there anyone else?
Anyway, as you already know, once this diagnosis is firmly established treatment needs to be closely individualized and disease activity followed using non-standard tests such as focal ERG, wide field ERG although sometimes high definition OCG can show a flair up.
How far can you travel?
basically as far as we need to
ok. Let me do some research. be right back.
All of the 'movers and shakers" who have done the majority of the research on this disease are no longer actively practicing........
ok. are you finding anybody?
you said you have treated people with this, what types of treatment have you used? have you heard of dr. nguyen at johns hopkins - that is who she currently sees
However, the Retina department at Wills Eye hospital is very active in the general area of choroidal inflammation, of which PIC is classed with.
ok. where is that?
No. I don't know that doctor personally.
It is in Pennsylvania.
Here is a link to their service:
is there anyone in particular i should seek out there?
How long has your wife been dealing with this condition and how is Dr. Nguyen following the progression of her disease and her response to immunosuppression ?
Dr. XXXXX XXXXX is the Chief of the service and very well know in the retina community. Your wife would be well treated in his hands.
Here is his webpage:
she has been dealing with it for 10 years and seeing dr. nguyen for the past two years. he does four tests every visit inlcuding oct, a flourisine dye test, and two others
she just had another flair up last week and got put on iv steriods
Ok. It sounds like he is doing an excellent job of following her. I would expect that he is doing a focal and/or wide field ERG also
i think so
Unfortunately, as you and your wife have learned over the last decade, this disease is not something that is cured....only kept in check. Today is the first time since my fellowship that I've researched the literature on this topic and it seems that all the defining work was done in the 80's and 90's with some treatment "factoids" being published now and again since then.
ok. how do you treat your patients with pic
It wouldn't hurt to give Dr. Brown a call or maybe even go see him....it's not all that far from NYC and perhaps he might have some new insights for you.
i will look into that. thank you
I usually work in conjunction with an oncologist and suppress the immune system.
ok. with drugs like cellcpet?
My job is to follow the ocular findings while the oncologist manages the immunotherapy and systemic complications
yes, also methotrexate and, rarely, stronger drugs.
ok. she was on methotrexate for awhile
I understand, as much as someone who has not actually had to deal with this disease can, what you and your wife are going through. I wish I had a simple answer to your problems but, right now, modern ophthalmology doesn't seem to have that....
ok. well thank you very much for your help
My pleasure and, please, give my best to your wife for a rapid resolution to her current flair up.
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