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.

In 2020 I was diagnosed with PXF, both eyes. In spring 2023 my pressure was in the low 20s in both eyes and started on latanoprost. It got down to 7-8 by summer. In winter 2024 it's back into the low 20s, still on latanoprost. Last week my eye doc said I should have surgery for my 2+ cataracts because with PXF it's more successful when the surgery is done earlier. I'd like to get a second opinion but have no idea how to find the docs with experience doing cataracts on PXF glaucoma patients. When I ask, the offices cannot tell me how many cataract surgeries they do on PXF patients. Any advice? I'm 68 and don't want to risk complications and/or blindness just yet.

I posted about this earlier. Hope you are doing well. I was just at the GS yesterday and had a visual field test done. My GS was surprised that my left eye that had the attack over a year ago did not suffer any damage to the optic nerve and that the glaucoma has not gotten worse.
In September, I had an IOL sewn in. Next step is to have a DSAEK done to fix the Fuch's. Then on to the cataract in the other eye....

I was diagnosed with pseudoexfoliation at least 15 years ago. My right eye has always tested a few points higher but was always at or below 21. Nine months ago it went to 34 while my left was at 12. My ophthalmologist, who is experienced with PXF and treats glaucoma, started me on Latanoprost drops each night. My pressure in 3 months was 12 and 20. Six months later my right eye was still 22. We discussed SLT surgery to open the trabecular mesh work. I agreed and we completed the laser treatment in 15 minutes. Four weeks later I was at 12 and 17. The treatment can be repeated. Someday it may no longer work due to PXF. There are other options then.
I also have a cataract in the same eye that is advancing. Since I just had a prostatectomy at Mayo in Rochester, I told him I can wait for surgery. We discussed PXF surgical complications and he assured me he is ready with the latest technology and experience in case of zonule weakness. I, too have not seen much on the actual impact of PFX on other organs. Best of luck. Insure that your provider has good PXF experience. If not, find someone that does. Any glaucoma specialist should have experience since it is so frequent in people with PXF. Best of luck.

In 2020 I was diagnosed with PXF, both eyes. In spring 2023 my pressure was in the low 20s in both eyes and started on latanoprost. It got down to 7-8 by summer. In winter 2024 it's back into the low 20s, still on latanoprost. Last week my eye doc said I should have surgery for my 2+ cataracts because with PXF it's more successful when the surgery is done earlier. I'd like to get a second opinion but have no idea how to find the docs with experience doing cataracts on PXF glaucoma patients. When I ask, the offices cannot tell me how many cataract surgeries they do on PXF patients. Any advice? I'm 68 and don't want to risk complications and/or blindness just yet.