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  • MGD1701
    commented on 's reply
    .................
    Last edited by MGD1701; 26-Sep-2017, 14:32.

  • PhoenixEyes
    commented on 's reply
    Are you already wearing moisture chamber glasses to reduce exposure to irritants? Ziena, 7Eye, WileyX etc.

    Looking at this page on dust mite allergy I wonder if using humidifers for your dry eye actually increases the dust mite population, "dust mites hate dry and cold air, so try to air the house and don't use an air humidifier". This page also mentions some types of eye drops "sodium cromoglicate, nedocromil, or antihistamines (eg azelastine)".

    http://www.netdoctor.co.uk/condition...-mite-allergy/

    Have you already tried preservative free antihistamine ketotifen Zaditen / Zaditor?

    https://www.ncbi.nlm.nih.gov/pubmed/24388379

    There's also preservative free Hylo Dual for allergies with Ectoin in it.

    http://www.ectoin.net/EN/home/

  • linguininess
    replied
    So I've always had ocular allergies since as long as I could remember, but my eyes always felt 100% okay. They were a little red when I wore contacts as far as I can remember since I was in middle school, but they definitely looked way worse than they felt. As of 6 months ago, I started experiencing dry eye pain and discomfort from what I guess was years of wearing contact lens that I was allergic to. Now, my lid margins feel burn-y and dry and stiff... I tried probing by ****** 4 months ago : no relief at all and I think it somehow caused more irritation. I tried lipiflow 1.5 months ago : no relief at all and caused my lid margins to burn even more so.

    I've been seeing an ENT, rheum, endo, derm doctors. All have performed their respective lab tests, blood tests, ultrasound, CT scans and etc, however everything came back normal. So frustrating! The only thing that was abnormal were my Vitamin D levels, but that was on the border of normal and low. I am continuing doing allergy injection shots, but I am only on week #9 so it's too early to tell if it is effective. I find 0 relief from warm compresses, and only temporary relief from cold compresses. I find mild relief from blephedex and avenova, it helps but it definitely is not a cure.

    The only thing I can think of is that my redness and irritation is mostly caused by allergies. I had a dramatic reaction to dust mites that my allergist was shocked. I do what I can with dust: pillow and mattress covers, proper air filtration, AC vent filtration, etc.

    My glands were grade 3 according to another doctor at Ocala Eye. Grade 3 being toothpaste-like quality and grade 1 is like olive oil. Even after lipiflow and probing, my oil seems to still be grade 3. I literally have no idea what to try next other than wait for my allergy shots to have some effect which could take up to a year unless I do cluster or rush shots. Olopatadine is effective but the preservatives seem to negate its effectiveness. This doctor also suggested I try a gluten-free, sugar-free, dairy-free diet and to up my omega3 intake. I've done all that but there's been so significant progress.

    Anyone have any idea on what to do?

    Leave a comment:


  • linguininess
    commented on 's reply
    Originally posted by Hokucat View Post
    Yes, there are some drops the compounding pharmacies are not able to make because a company has the patent on the active ingredient, or I guess even a patent using the active ingredient in a certain application or something. I've come across that before on a different eye drop.

    Perhaps try looking for a different ingredient allergy drop that is preservative-free. In the U.K., Catacrom is often mentioned for allergies and it's PF. Perhaps that active ingredient is available in the U.S.

    http://www.moorfieldspharmaceuticals...tacrom_PIL.pdf
    Thanks Hokucat I tried finding this in the US, but to no avail, I was not able to find it after calling many compounding pharmacies in the US.

    Originally posted by PhoenixEyes View Post
    Another preservative free allergy option is Hylo Dual (available in Europe via Scope and Ursapharm, Canada via Candorvision). I think it was also known as Hycosan Dual in another dispenser.

    It's also meant to help spread lipids / oils more evenly across the eye which might help with evaporative dry eye due to MGD.

    0.05% Sodium Hyaluronate and 2% Ectoin

    http://www.ectoin.net/EN/home/

    http://candorvision.com/hylodual/

    http://www.scopeophthalmics.com/hylo/hylodual

    http://www.butterflies-eyecare.co.uk/hylo-dual.html
    I love Candor Vision products. I have every single one of their products. I used to live in Quebec (which is where they're based), so their products were easily available in pharmacies. Unfortunately, the allergy drop from Candor vision isn't as effective for me specifically.


  • PhoenixEyes
    commented on 's reply
    Another preservative free allergy option is Hylo Dual (available in Europe via Scope and Ursapharm, Canada via Candorvision). I think it was also known as Hycosan Dual in another dispenser. Also called Hylo Protect, CONISAN N, Collypan, Ectohyal, Eye-t in certain countries (based on the Ectoin site).

    It's also meant to help spread lipids / oils more evenly across the eye which might help with evaporative dry eye due to MGD.

    0.05% Sodium Hyaluronate and 2% Ectoin

    http://www.ectoin.net/EN/home/

    http://candorvision.com/hylodual/

    http://www.scopeophthalmics.com/hylo/hylodual

    http://www.butterflies-eyecare.co.uk/hylo-dual.html

    Study regarding effect on lipid layer / meibomian oils:

    http://www.sciencedirect.com/science...05273614001837
    Last edited by PhoenixEyes; 22-Jun-2017, 12:23.

  • Hokucat
    commented on 's reply
    Yes, there are some drops the compounding pharmacies are not able to make because a company has the patent on the active ingredient, or I guess even a patent using the active ingredient in a certain application or something. I've come across that before on a different eye drop.

    Perhaps try looking for a different ingredient allergy drop that is preservative-free. In the U.K., Catacrom is often mentioned for allergies and it's PF. Perhaps that active ingredient is available in the U.S.

    http://www.moorfieldspharmaceuticals...tacrom_PIL.pdf

  • linguininess
    commented on 's reply
    Originally posted by Hokucat View Post
    Hi linguininess. Have you called a compounding pharmacy to see if they can make a preservative-free version of Pataday? There's only certain compounding pharmacies that have the facilities to make eye drops. One that I've used which I know makes drops and is not unreasonably far from where you live is Rancho Park Pharmacy. They are in Los Angeles on the Westside. I believe they will also deliver for a fee.

    http://ranchoparkrx.com/
    Thanks for your reply. I go to rancho park for my dexamethasone PF, autologous, and mucomyst drops. Unfortunately, they don't/can't make olopatadine preserved free. I believe it has something to do with the active ingredient not being available outside of Alcon. I'm not sure, honestly, of the legalities behind pharmacies obtaining olopatadine. I have called many compounding pharmacies from LA to SF, but maybe there is a pharmacy out there somewhere who can compound it preservative free. I'm assuming it is possible to compound it because there are non-Alcon generic versions of patanol available.

  • Hokucat
    commented on 's reply
    Hi linguininess. Have you called a compounding pharmacy to see if they can make a preservative-free version of Pataday? There's only certain compounding pharmacies that have the facilities to make eye drops. One that I've used which I know makes drops and is not unreasonably far from where you live is Rancho Park Pharmacy. They are in Los Angeles on the Westside. I believe they will also deliver for a fee.

    http://ranchoparkrx.com/

    Also RoxSan Pharmacy in Beverly Hills used to make eye drops, but not sure if they still do. I heard they no longer make autologous serum tears, but maybe still compound other eye drops.

    https://www.roxsan.com/
    Last edited by Hokucat; 21-Jun-2017, 23:26.

  • linguininess
    replied
    Well, looks like I'm just checking off yet another item on a list of very expensive treatments.

    I have papillary conjunctivitis (though the insides of my eyelids don't look THAT extreme when you google the images of this condition) and MGD. I think the reason behind my red, inflammed eye lids is due to allergies. I only think this because I get extreme relief when using Pataday, unfortunately the preservatives in pataday cause my eye to go back to being irritated and red after only a few hours. I also think this because I did't get any positive results from MG probing + steroids.

    So about lipiflow: I knew subconsciously that this treatment wouldn't work for me. Luckily, I do have money to spare so I said why not. Turns out, the lipiflow treatment made my eye lids worse afterwards. My lids now feel stiff, dry, burning/stinging..basically they feel like I'm at a beach and the sand and salt water are irritating my lids.

    I'm not sure what else to try. I am on allergy shots, though I won't be seeing results until a year from now. I'd love to try pataday again but the preservatives end up doing more harm than good. I recieved PF ketotifen, but I get no relief from that (I guess only pataday helps me with my allergies). No relief from: autologous serum, lid scrubs, supplements, doxy, night goggles, PF re-wetting drops, probing, prokera, and now lipiflow.

    I'm trying to stay positive, but it seems like allergies+lipiflow, allergies+probing, or allergies+anything just aren't good combos. Lipiflow introduces heat, which "activates" my allergies. I feel relief from irritation with cold washes and compresses, but they end up feeling dry a few moments later.

    I'm not sure what else to try. I'm trying my best to stay positive. My next step is to tackle my chalasis. I saw ****** a few months ago who diagnosed me with chalasis. I assumed that he literally tells every patient they have chalasis, but I've seen many world-top doctors here in Beverly Hills who also say I have chalasis. I'm just worried because even if I do go for the AMT procedure, it will treat my chalasis but will obviously not help my MGD or allergies. Even so, I'm still willing to do this procedure if it means improving my symptoms.

    I'd like to hear what other people are doing for their eyes and lids when they have extreme allergies like me.

    Leave a comment:


  • Hokucat
    commented on 's reply
    You're welcome, Kane. Thanks for providing further background.

    You mentioned excessive use of devices might be a cause. I've read people blink 60% less when using devices. If this is you, your eyelids are not pressing together often enough to release oils in your glands, causing blockage and MGD. When you had the LipiView consult, did their tests show you were not blinking enough or had partial blinks? If so, doing hourly blinking exercises can be helpful.

    If you try sclerals, it's important to see a practioner who has extensive training and experience fitting sclerals. Since there is not a PROSE clinic in Australia, there are a couple non-PROSE fitters in Australia listed in the scleral resource below, which Rebecca sent out in one of her recent KeratoScoop emails. My PROSE doctor and another doctor I heard good things about are on the list, so hopefully this is a good resource for you:

    http://www.sclerallens.org/scleral-fitters

    Autologous serum tears may help with the surface of your eyes. These are eye drops made from your blood serum, which have properties very similar to tears. This would need to be prescribed by the ophthalmologist.

    I'm glad reading my original post gave you hope you can get through this. This forum is certainly a wealth of information and support. You will find the thing or combination of things that will help you, it just may take some time.

  • MGD1701
    commented on 's reply
    Hi Joe,

    Here is an interesting/useful case report (Jan. 2017), comparision of: LipiFlow, Blephasteam, Bruder mask, MiBoFlo
    title: ''The Limitation of Applying Heat to the External Lid Surface: A Case of Recalcitrant MDG''
    I have been curious about this topic. I have tried three of above except MiBoFlo.
    full text https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5301113/

    If you have stye often, you might have scar tissues then BlephEx/probing should help.

    IPL seems very effective for people with both Rosacea & MGD, I have read.
    Last edited by MGD1701; 03-May-2017, 04:43.

  • MGD1701
    commented on 's reply
    Hi Kane
    I also did LipiFlow no much relief.

    Vit. D and A - Good to check these out.
    Last edited by MGD1701; 05-Jun-2018, 10:03.

  • Waesk
    commented on 's reply
    Hey Hokucat,

    Thank you so much for you reply. I have been drinking green tea with lemon ever since I came across your post in the triumphs section. Your story is very inspiring and gives me hope.

    I think it might be from either excessive use of devices or medication that I was give when on a trip to thailand. I uses Visine alot when I was younger so it could be from this also.
    I have not been tested for auto-immune diesease.
    The specialist said that when they push on my lids that oil does come out but it is a little thick and of low quality. The inside of my lids and eye balls are very inflamed and has gotten worse over the last few months.

    I have been looking at the lens today and think I will ask my ophthalmologist about this tomorrow.

    I have also been on the GAPS diet for 2 days. It is hard but I am willing to try anything.

    Thank you again for your response it is comforting to know we are not alone in this battle.

    If you have any more advise for me please feel free to throw it my way

    Kane


  • Hokucat
    commented on 's reply
    Hi Kane. Do you know what the cause is of your MGD...autoimmune disease, excessive use of electronic devices, diet, partial blinking, etc.? Ideally need to address the cause to resolve this in the long run.

    After unsuccessful Lipiflows, a few of us in this forum had probing, which worked to open up our glands because we had scar tissue and/or severe blockage, which Lipiflow was unable to address. Probing is mainly available in the U.S., so IPL and manual expression might your best options. Every procedure has its pros and cons. However, probing, although the most invasive, may the only procedure that can open up the glands blocked from scar tissue.

    Once you open up the glands, you need to keep them from getting blocked again. After probing, I was able to make my thick oil change to flowing oil, which prevented future blockage, by drinking fresh lemon juice in green tea. Somehow for me, that's what my body needed. For someone else, periodic IPLs worked to keep their glands open. LipiFlow and expression may also help.

    To help manage your symptoms, have you ever considered scleral lenses? These are nickel-sized dome-shaped rigid gas permeable lenses that vault over your cornea to bathe it in saline. These lenses have been used increasingly to manage dry eyes, however not everyone can wear them. Sclerals also correct vision. Here's a good summary of sclerals in general from the Boston PROSE lenses website (there are several different brands):

    http://www.bostonsight.org/PROSE/PRO...y-Eye-Syndrome

    I wear my PROSE sclerals 12+ hours a day, and I could not function as well and comfortably as I do without them.

  • Waesk
    commented on 's reply
    Hi Linda,

    Its been a few days and unfortunately no good news to report.

    I am still hopefully as it does take a few week to months I am told.

    However my eyes feel drier and I cannot go outside because of the winds effect on my eyes.

    Not sure what to do now.

    Kane
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