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My wife has been diagnosed with P.I.C. which is a rare eye

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disease. She has been...
My wife has been diagnosed with P.I.C. which is a rare eye disease. She has been on a treatment regimen of cellcept and prednisone. Recently her doctor has concluded that this course of action is not working toward prevention. Do you know of any other possible courses of action? Do you know any specialists who have studied P.I.C.?
Submitted: 6 years ago.Category: Eye
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12/6/2011
Eye Doctor: Dr. Rick, Board Certified MD replied 6 years ago
Dr. Rick
Dr. Rick, Board Certified MD
Category: Eye
Satisfied Customers: 11,673
Experience: Ophthalmology since 1994 with Retina sub-specialty interest
Verified
Dr. Rick :

Hi. I'm online and happy to answer your question today.

Customer:

Thank you

Customer:

do you know of any specialists who are studying p.i.c?

Dr. Rick :

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?

Customer:

punctate inner choriodopathy

Customer:

inflammation in the back of the eye leading to blind spots in vision

Dr. Rick :

Got it.....I've treated a number of cases of this condition but never abbreviated it that way :)

Customer:

ok

Customer:

her doctor was treating her with cellcept and prednisone but found it to not be effective

Customer:

do you know of any other way of treating this or doctors who are studying this and would have other options to treat her?

Dr. Rick :

The differential diagnosis list for this condition is long and branching. Has your wife been evaluated by a retina specialist?

Customer:

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

Customer:

do you know of any eye doctors out there who are currently studying this condition and would have some new type of treatment

Customer:

?

Dr. Rick :

Dr. Watzke is the worlds leading expert on this condition. I was just trying to see where is is located now.......

Customer:

ok

Dr. Rick :

Looks like he is currently at Oregon University in Portland, OR

Customer:

ok. does he still see patients?

Dr. Rick :

I don't think so as I'm having a lot of difficulty finding him anywhere but on the American Academy of Ophthalmology site.....

Customer:

is there anyone else?

Dr. Rick :

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.

Dr. Rick :

How far can you travel?

Customer:

basically as far as we need to

Dr. Rick :

ok. Let me do some research. be right back.

Customer:

ok

Dr. Rick :

still checking.....

Customer:

ok

Dr. Rick :

All of the 'movers and shakers" who have done the majority of the research on this disease are no longer actively practicing........

Customer:

ok. are you finding anybody?

Customer:

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

Dr. Rick :

However, the Retina department at Wills Eye hospital is very active in the general area of choroidal inflammation, of which PIC is classed with.

Customer:

ok. where is that?

Dr. Rick :

No. I don't know that doctor personally.

Dr. Rick :

It is in Pennsylvania.

Customer:

ok

Dr. Rick :

Here is a link to their service:

Dr. Rick :

http://www.willseye.org/patients/services/retina/

Customer:

is there anyone in particular i should seek out there?

Dr. Rick :

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. Rick :

Dr. ***** ***** is the Chief of the service and very well know in the retina community. Your wife would be well treated in his hands.

Dr. Rick :

Here is his webpage:

Dr. Rick :

http://www.willseye.org/patients/drview16ca.html?drid=142

Customer:

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

Customer:

she just had another flair up last week and got put on iv steriods

Dr. Rick :

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

Customer:

i think so

Dr. Rick :

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.

Customer:

ok. how do you treat your patients with pic

Customer:

?

Dr. Rick :

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.

Customer:

i will look into that. thank you

Dr. Rick :

I usually work in conjunction with an oncologist and suppress the immune system.

Customer:

ok. with drugs like cellcpet?

Customer:

cellcept

Dr. Rick :

My job is to follow the ocular findings while the oncologist manages the immunotherapy and systemic complications

Dr. Rick :

yes, also methotrexate and, rarely, stronger drugs.

Customer:

ok. she was on methotrexate for awhile

Dr. Rick :

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....

Customer:

ok. well thank you very much for your help

Dr. Rick :

My pleasure and, please, give my best to your wife for a rapid resolution to her current flair up.

Dr. Rick :

And, now, the obligatory word from our sponsors: :o)

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Dr. Rick
Dr. Rick, Board Certified MD
Category: Eye
Satisfied Customers: 11,673
Experience: Ophthalmology since 1994 with Retina sub-specialty interest
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Eye Doctor: Dr. Rick, Board Certified MD replied 6 years ago
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Experience: Ophthalmology since 1994 with Retina sub-specialty interest

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