Pseudoexfoliation syndrome: Any experiences with treating it?

Hello @spinedisaster and welcome to Mayo Connect.

As I was not familiar with this disorder I did a little internet search on Google Scholar and found this article,

Here is another article, https://www.aao.org/eyenet/article/diagnosis-management-of-pseudoexfoliation-glaucoma

@spinedisaster While we are waiting for others in the Connect community to respond, could you share with us a little of your experience with this diagnosis and what type of treatment has been suggested? Is this a disorder for which you have recently been diagnosed?

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references that will come up in a Google search:
Genetics and Genomics of Pseudoexfoliation Syndrome/Glaucoma

Ophthalmologists explore causes, consequences of pseudoexfoliation syndrome
Ocular Surgery News U.S. Edition, June 25, 2016

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Hello @spinedisaster, While we wait to see if other members are able to share their experience with you I found a couple of associated articles that provide some information if you have not already seen them. I also applaud you for doing diligent research to find something that will help. Has your eye doctor offered any suggestions?

Monitoring and management of the patient with pseudoexfoliation syndrome: current perspectives (March 2019)
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6402616/?report=classic

Pseudoexfoliation (PXE) Syndrome and Pseudoexfoliation Glaucoma (March 2017)
-- https://www.brightfocus.org/glaucoma/article/pseudoexfoliation-pxe-syndrome-and-pseudoexfoliation-glaucoma

The Art of Managing PXF Glaucoma (April 2012)
-- https://www.reviewofophthalmology.com/article/the-art-of-managing-pxf-glaucoma-33327

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Although I have had lifelong annual or more frequent eye exams it wasn't until my preliminary cataract surgery exams a few years ago that anyone mentioned that I had pseudo exfoliation. My eye exams for the last 18 years have been done with state of the art equipment but even that did not detect the pseudo exfoliation. If I hadn't developed cataracts I would not have known about it until I developed glaucoma, which is a common progression. The type of glaucoma that results from pseudo exfoliation is apparently a more rapid developing and serious type and for that reason anyone with pseudo exfoliation must have quarterly or more frequent glaucoma checks with a glaucoma specialist. I am on a quarterly schedule, soon to be every few months. This is a metabolic malfunction caused by one or more DNA variants, it has no known cure, just a few treatments and unfortunately the fibrils that result don't affect just the eyes, they are found in many other organs and may contribute to many diseases and premature organ deterioration. In the past the condition was linked primarily to specific populations but with better testing that is no longer the case. While doctors are busy treating the effects of heart, liver and kidney disease they apparently don't look for the signs of pseudo exfoliation which may be the actual cause of disease. I have not so far had any treatments but am beginning to show a more intense impact and can look forward to treatment in the next few years in order to keep glaucoma from destroying my sight. Although this variant is inherited my family is long lived but does not have a history of glaucoma (one relative) or it was not diagnosed. There's a lot of information on the Internet (contradictory and incomplete) and because pseudo exfoliation affects so many organs in addition to eyes in my opinion anyone who has been diagnosed should do a lot of reading and research and be in regular contact with a glaucoma specialist who will track and treat the build up of the cells and eye pressure. I hope people who have had treatments will post what was done and the effects of the treatment.

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I am going through basically the same experience,.. I was just recently told that I might need to have the surgery which came as a complete surprise since I have been told as long as my pressure stays low, I am doing as best as can be,..considering that my Gluacoma is severe. Now I am told I have pseudoexfoliation glaucoma and cataract concern,..so, confused. Going back in 2 months to see if my condition is the same or getting worse,..therefore the possible need for surgery with the new diagnosis.

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Although I have had lifelong annual or more frequent eye exams it wasn't until my preliminary cataract surgery exams a few years ago that anyone mentioned that I had pseudo exfoliation. My eye exams for the last 18 years have been done with state of the art equipment but even that did not detect the pseudo exfoliation. If I hadn't developed cataracts I would not have known about it until I developed glaucoma, which is a common progression. The type of glaucoma that results from pseudo exfoliation is apparently a more rapid developing and serious type and for that reason anyone with pseudo exfoliation must have quarterly or more frequent glaucoma checks with a glaucoma specialist. I am on a quarterly schedule, soon to be every few months. This is a metabolic malfunction caused by one or more DNA variants, it has no known cure, just a few treatments and unfortunately the fibrils that result don't affect just the eyes, they are found in many other organs and may contribute to many diseases and premature organ deterioration. In the past the condition was linked primarily to specific populations but with better testing that is no longer the case. While doctors are busy treating the effects of heart, liver and kidney disease they apparently don't look for the signs of pseudo exfoliation which may be the actual cause of disease. I have not so far had any treatments but am beginning to show a more intense impact and can look forward to treatment in the next few years in order to keep glaucoma from destroying my sight. Although this variant is inherited my family is long lived but does not have a history of glaucoma (one relative) or it was not diagnosed. There's a lot of information on the Internet (contradictory and incomplete) and because pseudo exfoliation affects so many organs in addition to eyes in my opinion anyone who has been diagnosed should do a lot of reading and research and be in regular contact with a glaucoma specialist who will track and treat the build up of the cells and eye pressure. I hope people who have had treatments will post what was done and the effects of the treatment.

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Thank you for your comments. They had helped me understand my condition. In my case, I was recently diagnosed while undergoing cataract surgery and developed fluid retention, and high eye pressure . A week after my cataract surgery I was taken back for further surgery and removal of the residual cataract left behind. My eye pressure is back to normal, but my vision has not improved. My concern now is that in the near future I developed blindness in my left eye.

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