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Where do all the Accutane/ Roaccutane induced MGD/ Dry Eye Sufferers disappear to?

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  • Where do all the Accutane/ Roaccutane induced MGD/ Dry Eye Sufferers disappear to?

    Hello all! You can call me DryEyeNick.

    I am 5.5 months into post accutane MGD. I stopped Accutane in my 4th month with only one third of the recommended cum dosage, (20mg 1st and 2nd months, 30mg 3rd month, and 40mg 4th month), as i woke up one day with bloodshot eyes.

    Since Accutnae cessation I have been doing the Heated Eye mask daily, now twice per day, I do take Omega 3s, and Actually did a lipiflow 3 weeks ago. All in hopes to get my Meibomian Glands back to normal (Post accutane they have been clogged up and upon expression release white/yellow toothpaste like consistency oils). So far no success to report sadly.

    As you may know, it a very frightening and shocking situation to be thrown into all of a sudden because of 3.5 months of medicine usage! So I have been scouring the net/ dryyeezone/ Acne.org/ Health-boards/ reddit/ you name it and keep seeing that people come on and post very frequently for a few months or maybe a few years depending on the case asking and answering and complaining, etc... then they simply dropped off. Does that mean they gave up? got better? passed away? Like where do they go and why do we not get a final status report if they intend to leave

    I don't mean to sound negative or anything.. I am just really disappointed that we don't et to understand where they have gone to.. Maybe som here have kept up with some of these users offline? Please help us complete the story if you have.

    I don't know if this violates any policy of DEZ, but some the of the users I am interested in hearing about where they are, are; untkicker29, Anthony16, Vice, jaybo, Cournot...

    Any other Accutane MGD cases that recovered? Just trying to get a few cases that may have improved/ healed to weigh in here as well!

    Much thanks

    DryEyeNick

  • #2
    Wow, I hadn't even seen this when I posted about Accutane this morning. Someone on FB was asking about therapeutic potential. I didn't see a lot on TFOS DEWSII specifically about this, other than the references to androgen therapy in the pathophysiology report and more generally to AT for MGD in the sex/gender/hormone report, but I haven't really searched others for this yet.

    As regards people: When people who were here for a long time don't come back, usually they either got better or at least they moved out of the crisis stage and moved on with life... Funny, every time the word Accutane comes up I think of untkicker29. He really was the poster child for how badly Accutane can mess with your life and at a vulnerable age. I really hope he's doing well now. It's been so long I don't even remember but it seems to me at some point I had heard from him that he was doing better.

    It is one of the most frustrating things about dry eye that we don't tend to get much data on very long term outcomes with specific causes, and so of course we're looking for anecdotes from people online, but those can be equally difficult to come by.

    People's email addresses change so much that I don't know how useful it would be to reach out, but for those who gave permission to be contacted by admins, I could try reaching out by email to people who haven't been on the forum in a long time. Hmmmmm.
    Rebecca Petris
    The Dry Eye Zone

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    • #3
      Can also try sending them a Private Message, for which a notification will appear in their e-mail, if they still have the same e-mail address.

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      • #4
        I have sent private messages to more than 12 Accutane MGD dreEyeZone former users. No reply except from one. She has had 50% improvement but I think its mostly symptoms not functional.

        BTW, Rebecca you have been a godsend to me during this scary time. Should be sainted IMO!

        If you can reach out to them via email that would be lovely to get information on their current state. What i ma interested in is have their Meibomian glands actually started functioning again like they used to? From what I hear you can improve symptomatically but actually not have improvement in the actual functional state of your glands. While that is definitely a relief, i still would prefer a story where the glands went back to normal operation again and then the eyes got better!
        Seems like wishful thinking at this stage tbh. But does not hurt to ask.

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        • #5
          So kind (blush). I'll see what I can do!
          Rebecca Petris
          The Dry Eye Zone

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          • #6
            Rebecca Petris HI Rebecca.. any chance you reached out to some of these former members?

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            • #7
              Hi everyone.
              Ive signed up to this forum to hopefully find some people like me and to get a little hope for the future.

              So for for the past 6 weeks I have been suffering from dry eyes, blocked MG and some inflammation on my upper lids.
              Starting from the 1st of February I took roaccutane 20mg a day for 7 weeks before ceasing the course due to sore joints. It was about 3 days before I stopped the roaccutane that my eyes started going a little blurry, and then the upper right lid became very inflamed and my eyes started drying (particularly the right eye).
              I went to a optometrist and he said I had MGD and that is was permanent.
              I have been doing lid cleansing and hot compress since the 29th of March and the lid inflammation has reduced and they are no longer sore but the dryness is still there.
              I am using systane balance drops but they donít seem to be working and I am using them hourly at the moment.
              When I apply them they sometimes irritate my eye as well, especially inner corner of my eyes (makes them itchy).

              Very long post but Iím getting desperate, I just feel like I canít live like this, it is effecting my whole life.

              Thanks
              maddy

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              • #8
                Short story Maddy, if drops are irritating stop using them and switch to something else. I find it helpful not to use the same drop over and over again to minimize the risk of developing a sensitivity, it is better to switch them up if you are using them that frequently because part of the problem could be that you are treating inflammation with a drop that causes them to be inflamed
                , if you get my point.

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                • #9
                  Hi, I have had dry eyes from accutane for a long while, used to post more often but not much anymore, my advice would be to not focus so much on expensive treatments and try to focus on getting the accutane out of the body, through diet and detox etc. which is the root cause as I believe the base is still in the system. I still haven't been able to work out how, but this guy seems to have had great success.

                  https://www.youtube.com/watch?v=o3bgYlCG4js

                  From the comments:


                  "The two things that have helped me get close to full health: 1. atkins / ketogenic diet, minus vitamin A: minus fish, dairy, eggs, liver... My first diet: ham (low sugar one), chicken, some courgette, some beetroot, a few brazil nuts, but mainly vinaigrette (extra virgin olive oil & apple cider vinegar) scooped up with lettuce leaves. 2. seeing Dr Michael Culp, based in London. fantastic doctor. Website: www.nhwc.co.uk My health generally improved through seeing him, but i noticed an immediate improvement with the following supplements: asphalia, before sleep (tho this came to make my sleep too deep for a while, but this passed when i took saw palmetto, or at least coinciding with my taking saw palmetto) / formaldehyde relief / rhemannia eight, with cran clearance / acf 288, with renal plus."

                  I have spoken to the guy a few times over email and is very genuine and not selling anything. I tried to get an appointment with the dr mentioned as well Dr Michael Culp but wasn't able to as he is in the U.K

                  I also wrote a post about it a while back:

                  http://forum.dryeyezone.com/forum/dr...-stop-dry-eyes

                  Also just came across this article regarding probiotics, mentioned in it is one accutane dry eye patient that was helped greatly by using probiotics

                  http://www.optometry.org.au/blog-new...-help-dry-eye/
                  Last edited by alex123711; 27-May-2018, 02:26.

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