Yes, I think it is a part of our disease, unfortunately.
I've had dry eyes for the last few years and it became a real problem last year when I got diagnosed with the following:
• Blepharitis of both eyes with rosacea
• Vernal keratoconjunctivitis of both eyes with limbar and corneal involvement
• Meibomian gland disease, unspecified laterality
I was put on a bunch of meds along with the hot packs for 20 minutes every night. I had tried a store bought boric solution similar to this
one before I finally had to go to a doctor to find out what was going on. It did soothe my eyes but didn't solve the problems above.
I use Ketotifen drops now because he said the allergy inflammation looked very bad and even though I was told to wean off the others he wanted me to keep using something for the allergies 2-3x per day.
"Tears" actually dry my eyes out more
so I tried a drop from Europe that has hyaluronic acid in it instead. That initially soothes and kinda coats the eye but later my eyes feel more itchy and irritated so I only use that along with the Ketotifen if my eyes are unbearably dry. (
Here is that European Drop if you want to look at it. The bottle is very frustrating to use though.)
Also when the doctor told me to use warm compresses, I just assumed that meant wet wash
clothes. I've since tried that and the microwave pads and think the wash clothes work better because they actually do lend moisture.
I take a clean wash cloth and wet it with water from our purified tap, squeeze out the excess, and then microwave the cloth on a clean saucer for about 25 seconds. (You do have to let it cool some, hence the saucer, but I like to do it this way because I feel like I'm sterilizing the water/wash cloth too.) Then I lay down with it pressing it onto my eyes gently so it touches the entire length of the eye lash for 10-20 minutes. Don't press hard though or you'll see "stars" when you finish.
One more thought...just last night I was reading from cfsremission.com and he made the comment that when he tried Mutaflor his, "Dry Eye and Dry Mouth disappeared after 4 days." (Mutaflor is something I've been wanting to try for some time so will be ordering that after the first of the year.)
Here is the link if you want to read the page yourself.
I'm glad to see your again. I also had been wondering how you were doing as I hadn't seen you on PR for a while. Sorry you are going through so much though. Hope some of these comments help.
Judee thanks so much for all this information. Just finished researching what you replied!!
OK hope you don't mind questions because I have a lot!
I have been going thru this mess of itchy/pain - it is overpowering my life now, it seems to get worse and worse.
First off - how did you get diagnosed with Blepharitis?
I was told with my first corneal abrasion summer 2017 - the Resident who I know quite well told me - because I assume she "saw it"? Then I had my exam with her boss - my Glaucoma dr. He told me "No, you don't have
Blepharitis, you have allergic conjunctivitis" He knew his resident had told me I had blepharitis, and I do have it.
I was told to start doing Ketotifen Fumarate sold in States as "Zaditor" (Walgreens).
I now buy it at Walmart - Walmart brand Equate - Eye Itch Relief - AntiHistamine eye drops.
They did help back then, but not now at all.
So I was told last year I had "Conjunctivitis" in both eyes like you.
Unlike you - not told I had "Vernal Keroconjunctivitis with Limbar and Corneal Involvement" - can you explain what the Vernal Kero......... means, and the Limbar and corneal involvement?
I was told that with Blepharitis - it often affects the cornea - so the Director of Dry Eye Clinic down at
Hopkins Wilmer Eye Institute saw me early Feb 2018 with unending itching/pain - she told me I had to see
her every 6 months - to keep watch on my corneas.
I looked up the Eye Wash Bausch and Lomb you used - you said it didn't work long run, so don't bother with it?
December 2018 has been seeing my Glaucoma Doc's Residents - meeting late at Kreiger Eye - to find I have yet another corneal abrasion - this is when I knew I had much more than Blepharitis.
Of course not one dr at Hopkins or Kreiger told me I had "Anterior Basement Membrane Dystrophy" which is a
fancy word for corneal problem - that often goes with Blepharitis.
It is when one of the epithelium layers protecting the cornea is not in good shape so it doesn't protect one's cornea very well - causing problems to your eyes, vision, itching, etc.
Have no idea why all these very bright drs at Hopkins and Kreiger which is part of Hopkins decided to never tell
me that I have ABMD or EMD, whatever - I was shocked when I had to call Resident on call 2 weeks ago due to vision loss - my bad left eye - looked like I had sheet over it - everything went white for 5 hours.
Since my Antihistamine drops don't work, and my eyes are so itchy in each corner, and left bottom eyelashes,
this new Hopkins Corneal guy gave me 2 new scripts.
One is Prescription Pazeo- this has Olopatadine hydrochloride, boric acid, interestingly also Benzalkonium chloride which I read is the ingredient in WET ONES from Walmart to disinfect hands. Many use this Benza stuff to clean eyelids/eyelashes for Blepharitis.
Anyway it is pretty expensive at $212.00 - paid less with insurance but it is tiny tiny bottle.
Nothing, and I mean nothing is stopping eyelid itching. SO I bought the Wet Ones from Walmart yesterday.
Again this new Dr gave me Prescription - to put on eyelids - the MOST expensive drug I bought in my lifetime.
This ointment is called Lotemax 0.5% Ointment - has Loteprednol Etabonate, with mineral oil, petroleum.
This costs $310.00!!! Do you believe it? I almost didn't get it, but I am so so desperate after going thru this
for 1 1/2 years, just getting worse. I paid $106.00 with insurance - but can't buy it again.
This month I spent more on eye stuff than I have any month in my life!!
Thanks so much for the link to Amazon for the German eye drop Hylo-Forte Hyaluronic acid. I read the reviews.
Everyone loves these so much - even those with Meibomian Gland dysfunction!!
Everyone hates the delivery system. Also they hate the price.
I was started on Restasis - which is expensive. you get 30 vials - I was to pay $120.00 for 3 month supply.
How long does the HYLO-FORTE from Amazon last you? I know you don't use it much but how long do you
think I could use it - if doing it 2X/day? It costs $24.00 - so it would be cheaper than Restasis.
But my left thumb is useless due to new joint (arthritic) so I can never open anything.
I did try Australian Tea Tree Oil mixed with Johnson's Baby Shampoo - just tiny drop of Tea Tree oil, with 2 drops of baby shampoo in 100 ml water - to wash lids, lashes. The Tea tree oil is very strong so be careful.
You said using the German Hylo-Forte gets your eyes more irritated and more itchy, did your doctor even approve it?
I saw that there is a Hylo-Tear and a Hylo-Care (has Hyaluronic Acid) but helps the cornea. Wonder if they are as irritating.
Lastly read the guy's thing from cfsremission on Mutaflor - I don't get it, what is Mutaflor? All I got was he does
Niacine/Nadh which I can't do.
Hope you read the Post here on taking Thiamine - that is something I ever knew, so happy to find out.
Reason I haven't been on here is sort of personal if you want to PM me. But I have had the worst year of my life so far this year - starting in Jan 2018 with Blepharitis, etc, then in March 2018 getting rare thyroid disease.
By May 2018 I pretty much knew I was not going to make it - I could not even stand up without passing out.
I had dehydration, no iron (just had iron infusion last week) - and the thyroid disease makes my Gastroparesis 10 times worse - so I stopped eating - basically I could eat a few crackers and water all day, that is it.
I had everything in my ME/CFS so much worse - even things I never had before I got.
Every single step I took - was torture for me. My 10 toes hurt 24/7, my hips hurt so much, my feet could barely walk without so much pain, -= and when I had the audacity to write to my Endocrinologist of 25 years - he would claim nothing I had wrong had anything to do with this strange thyroid thing - which he has only seen 45 cases in his whole medical career (he is 60).
Even when I got severe GERD - I had to go to Hopkins Endocrinologist - who also has little experience with what I have. He thought and said "your thyroid slowed your stomach down to nothing, and your bowels, and since you have Gastroparesis and Colonic inertia - you are down to nothing so anything you eat, just a little broth will come up"
I thought after a week of this GERD that I was dying - I have never experienced what I have this year.
And I still have these symptoms - it has been 9 months of pure H-ll on earth for me.
This disease supposedly runs 18 months but no one knows - and this internist told me it won't ever go away.
I know that I can't live with this much longer.
I am so exhausted - my life has been reduced to trying to sleep, seeing a dr in an emergency, and trying to pay bills. It is a struggle for me to go much longer like this.....................so having this eye thing has just added so much more misery to me.
Every Dr I go to for my eyes - says - well take this, and come back in 8 weeks, or 3 weeks or 3 months, like I am going to have better itching or better vision - and nothing works.
I think not one Dr in the US knows one thing about these diseases, and now this guy saw an enlargement in my
optic nerve - he says"well at least you don't have Macular degeneration" I got so freaked out.
Starlily88