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Have you been diagnosed with Pseudoexfoliation syndrome (PEX)?

Posted , 5 users are following.

Proberts
Proberts

Seeking to start a discussion with other people who've had this diagnosis(PEX). It's an inherited condition caused by a powdering of cells in the eye which clogs ducts, builds up pressure in the eye and leads to a secondary glaucoma. It doesn't seem to be that rare (5% in some northern European countries) but there is no medication for it and apparently very little research.

3 likes, 15 replies

15 Replies

  • robert74727
    robert74727

    Posted

    Pseudoexfoliation is the most common cause of open angle glaucoma worldwide, and one of the most

    common causes of cataract surgery complications. Many of my patients have this condition, so I've created a web site for it with some useful, pertinent information: pseudoexfoliation.com

    Robert Cykiert, M.D.

    Ophthalmologist

    • Proberts
      Proberts robert74727

      Posted

      Dr. Cykiert,

      I sent you an email about a disease that sounded similar to PEX and asking if you knew anything about the treatments that are in fact being developed. I can't remember the details now (think it was Amyloidosis) but still wondering if you know of a connection. PR

    • Silverlink
      Silverlink barbara84789

      Posted

      I had cataract surgery on both my eyes on the same day  without any problems  My PEX was diagnosed  only in the last 2 years  when I was having injections for wet md I now ask for eye pressure tests  about every 3 months  which vary between 10 and 16 I don't know if the new laser treatment would be beneficial in relieving the pressure should there be any problem but fingers x new treatments are popping up and I would discuss your dilemma with your surgeon and go with his decision good luck keep me posted
    • barbara84789
      barbara84789 Silverlink

      Posted

      Hi Silverlink, thank you so much for your comment. It's good to know someone with the same syndrome. Mine was diagnosed less than a month ago and came as a total shock. Apparently, there's no way to know who will have a problem and who won't in surgery.

      It's a very mysterious disease.

      I have an appointment with my surgeon on July 6 and a list of questions a mile long. She comes highly recommended for cataract surgery and was the first doctor of the 4 I've seen who even detected the syndrome. One of my questions is how many patients with PEX have you personally operated on and what were the outcomes both during and after the sugeries.

      Did you have a capsular ring inserted in your eyes

    • Silverlink
      Silverlink barbara84789

      Posted

      Hi Barbara when I had my early cataracts done I just had bilateral multifocal lens in both eyes PEX is a problem with the LOXL1 gene and  can affect other organs it is prevelant in Scandinavian countries and is familial. I would love to find out which side of the family has inflicted me with another problem hope you receive positive news which hospital will you attend? Good luck silverlink
    • tenthirtypm
      tenthirtypm Silverlink

      Posted

      Hello Silverlink

      I turned to Patient under the pseudo exfoliation syndrome.  I saw Consultant last week and was alarmed to be told that I had it.  I am having my cataract op in March.  He is very experienced.  Can you tell me how you are now?  All the literature that I have read online is rather scary, and needless I'm apprehensive about it and it's affected my BP.  It's a year since you wrote and I hope you don't mind my writing to you.  I hope all is successful for you.  Thank you x

    • Silverlink
      Silverlink tenthirtypm

      Posted

      Hello my  "pseudo" hasn't become any worse I ask about every 3 months to have my eye pressure checked and so far so good my consultant thought this condition was rare but apparently not!! quite common in various countries including Ireland   and familial if your  consultant is aware of your  "Pseudo" l wouldn't be too worried and just be guided by his decision  it's my MD which is my problem hope all goes well for your op regardsx

    • tenthirtypm
      tenthirtypm Silverlink

      Posted

      Hello Silverlink

      Thank you so much for getting back to me so promptly - I did appreciate your reply and the positivity you have written now and in your original posting 😊. I'm glad the PEX is no worse, and that you are having regular check ups and that is ok.

      The Consultant who I'm under is very experienced and saw it straight away and was surprised the optometrist hadn't noticed it on routine annual check,as he is meant to be good! Ha!

      I must say I was a bit surprised and alarmed when I read up on it. I don't know anyone in my family who has it. Both my parents are no longer alive, and neither is my younger sister. I have emailed my elder sister in Canada and waiting to hear. I was interested in the Ireland connection with PEX. As my family are all Welsh for many generations - I hope more research can be done, and the wretched gene responsible can be sorted soon!

      Thanks again so much for your response - it really helped. Sometimes forums can be very negative and dark and I was a bit wary of putting my fears up there, but glad I did! Having something unusual is an isolating experience isn't it? Happy Days 😊x

  • Silverlink
    Silverlink

    Posted

    Hi I was diagnosed last year with pseudoexfoliation worse in my right "good " eye which has dry AMD than in the left with wet AMD I have been having lucentis injections now switched to eylea I ask which ever doctor I see. On my appointments to check my eye pressures I ask about every 2/3 months although if the pressures are significantly elevated there's nothing can be done so I just keep everything x and hope for a good reading
    • Proberts
      Proberts Silverlink

      Posted

      Hey, Silverlink. Any developments on the PEX front? I see an ophth. for the first time end of month. Hope all is well. 
  • Proberts
    Proberts

    Posted

    Silverlink. Thank you for weighing in. Let's keep exchanging information as we come across it. I do not have any other condition but PEX for the moment , and I'm unsure whether the treatments you cite are for your AMD. But I know what you mean, my optometrist tells me to come back to have my eye pressure checked. I'm thinking What for?

    Robert Cykiert, M.D. suggests looking at his web site above. He may have answers to that and other questions.

  • barbara84789
    barbara84789 Proberts

    Posted

    I was just diagnosed with exfoliation syndrome and need cataract surgery in both eyes is it worth the risk to have my eyes operated on by phacoemulsification? 

     

  • barbara84789
    barbara84789 Proberts

    Posted

    I haven't seen much on pseudoexfoliation syndrome on the eye-conditions blog. 

    Doea that mean it's not very prevalent in the UK?

  • Deb1002
    Deb1002 Proberts

    Posted

    New diagnosed with PEX, visit today with my OD, everything is good no pressure just small amount of material. My OD suggests just yearly check ups for now. Is there anything I can do proactively now? Should I be seeing a specialist? I'm not a candidate for cataract surgery at this time, My cataracts are very small. I'm 64 and in good health. Any information is helpful. I just want to be ahead of this not behind it. Thank You.

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