Biopsy to rule out autoimmune disorders

[grant555]

I am a 27 year old male that has had dry eye since I was 18 getting progressively worse. My eye doctor tried just about everything (restasis, azasite, doxy, artificial tears, nighttime eye wear) with no success. I have all four ducts plugged now, use warm compresses, take omega 3s, use an eye scrub. While the plugs make my eyes bearable, they still do not resolve the underlying burning that I feel on a daily basis. Without them, I cannot function by the end of the week. I am now going to the UIC eye clinic, which is a top optho clinic in the country. They already ruled out the standard autoimmune disorders, did thyroid tests and everything, with no results. Then, they biopsied my eye (probably one of the worst experiences of my life as they basically cut a chunk out of your eye while your awake). They tested for five antibodies. I tested significantly high for fibrin, but none of the others were found (except one (IgM) was possibly positive). They concluded that it was suggestive of ocular cicatricial pemphigoid. They are first putting me on doxy for 6 months to see if longer term treatment on doxy works, and then they are putting me on dapsone (an anti-inflammatory) which is used to treat ocular cicatricial pemphigoid. I was wondering if anyone has had an eye biopsy and if they had results like mine. The doctors were a little bit puzzled since one antibody was present but none of the other four that usually indicate OCP. Or, if anyone has been diagnosed with OCP or been put on dapsone, I would be interested in your experiences. But, just so you know, OCP is extremely rare and usually affects women over the age of 50.

[nycdryeyegirl]

Hi!

You might wish to seek a second opinion with a ocular immunologist (which is an eye doctor who specializes in inflammatory eye conditions), regarding your possible diagnosis of cicatrical pemphigoid.

There is a website called www.uveitis.org which has a section called "List of Specialists" and it lists eye doctors who specialize in ocular immunology.

One of the eye doctors listed at this site Dr. Howard Tessler, trained with one of the top ocular immunologists in the field (Dr. Stephen Foster) and you might wish to consult with him.

Howard H. Tessler, MD
University of Illinois at Chicago Eye Center Website
48 W. Greenleaf Avenue
Gurnee, IL 60031
Tel: (847) 662-4016

My eye doctor (Dr. Michael Samson) also did his fellowship under Dr. Foster and I am very pleased with Dr. Samson's treatment and care.

Pam

[ntr113]

did you get relief here?

hi, I may be diagnosed with this OCP soon. What happened since you posted in Feb of last year? I'm curious if that's what it ended up being and if the treatment worked. Thanks.

[mrchigley]

hi, I may be diagnosed with this OCP soon. What happened since you posted in Feb of last year? I'm curious if that's what it ended up being and if the treatment worked. Thanks.

Hi there. I am surprised they needed to biopsy the eye to diagnose OCP, I was diagnosed through a skin biopsy which has a flourescence test of some sort to prove it, but I am guessing you have no symptoms outside the eyes to do a immunoflourescence test on?

For the record I also had dapsone, which historically is a cure for lepracy so it used to calm blistering. I can also understand the doxy (I took that for 3 years). I went beyond that into steroids, cyclophosphamide and Rituximab. 5 years on I am in remission, however it was very aggressive so my eyes paid the price.

You might light to look at scleral contact lenses. I wear one and its a life changer.