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,
https://jamanetwork.com/journals/jamaophthalmology/article-abstract/639981
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?

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.

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.

I actually found out that I had this condition about 10 years ago when I went for an eye exam. The optometrist mentioned that I had this, but really didn't tell me what it was, only that it could mean that cataracts and glaucoma could be more difficult to treat. I really didn't think anymore about it.
This past May, I experienced a migraine and it hurt around my eyes. I went to the Urgent Care center near the house thinking that I had a sinus infection and trouble with an ear. He prescribed Bactrim and oral prednisone. Two weeks later it hadn't gone away and I went back to the doctor and was prescribed more pred. When I started seeing halos around the lights, the doctor said I should see the opthalmalogist right away. My pressure was at 60 and I was told that I had pseduexdoliation glaucoma, narrow angle closure and cataracts. The opthalmalogist tried to do an iridotomy, but it failed because my IOP was too high yet. After many drops of pred, and dozolamide, he referred me to a glaucoma specialist. I spent quite a while with her and she put more drops in my eyes and told me to come back the next day thinking that she was going to have to do surgery. She put me on dorzolomide, timolol, brimodidine, latanaprost, pred and diamox. The next day, my IOP had come down far enough that she decided to do an iridotomy instead, but I had to wait a couple of days for the inflammation to subside some. She put me on dorzolamide, timolo and brimodidine in my left eye and timolol and dorzolamide in the right. Since then, I have had an iridotomy in my right eye also. I have also had a cataract taken out in my left eye, but had complications with it (the zonals broke and the lens capsule fell back, leaving pieces in the anterior of my eye and the posterior). I had a vitrectomy done and now I am waiting for a lens to be sutured in. This was 3 months ago. I am still on drops. timolol and brimodidine and have been having a problem with getting the IOP's to stabilize in that eye.