Comment

Comment by Anne Louise on December 14, 2014 at 9:48pm

I see my optometrist tomorrow for Plaquenil follow up (retina check). He diagnosed the dry eye 6 months ago and recommended Blinks tears, which help me. I use them when I get up in the middle of the night and first thing in the morning...I feel like I have sandpaper on my eyelids. During the day and wearing contacts has not bothered me fortunately. I will ask him what he knows of autoimmune and dry eye. Clearly there is something here where so many of us suffer from this. There is an autoimmune disease called Sjorgen's syndrome where one of the hallmark symptoms is dryness: skin, eyes, mucus membranes.

Comment by Liz on December 14, 2014 at 4:59pm

Hi. I have read with interest about many of you who have dry, itchy eyes. Mine are a constant problem, for the past 18 months at least. In fact the only relief I have had was this past 10 days when I was taking prednisolone for a different problem. My eyes are so dry, they itch, burn, are blurry. I would be interested to know what things people use? I use Hyco Sans and|Opticrom. I even go to the opticians and eye hospital about them but never thought it might be related to the FFA. I also have chronically itchy ears which drives me insane at times.

Comment by NatalieW on December 14, 2014 at 12:46pm

Thanks MJ. I might start using it on my eyebrows as they are starting to disappear and I am keen to keep them if possible. PRP is Protein rich plasma - injections of your own centrifuges blood into your scalp. A bit expensive but very good studies in stimulating healing for other injuries.

Comment by MJ on December 14, 2014 at 10:36am

Elidel is a non steroidal topical used for the treatment of eczema. My derm, who is on the CARF board said they have seen some hair growth in FFA patients using Elidel. I have not noticed any other growth beside the eyebrows. It is an immunosuppressent so I won't be using it very long term.
mJ

Comment by Sad in chicago on December 14, 2014 at 9:40am

What's Elidel?  I used to use Rogaine on my brows but stopped.  I might try again.

Comment by MJ on December 14, 2014 at 7:40am

Natalie, I don't know what PRP is but i have been using Rogaine On my eyebrows for nearly a year and have managed to hang on to my brows. Have been also using Elidel since Sept and I have had some new growth.

Comment by NatalieW on December 14, 2014 at 1:56am

HI everyone - just wondering whether anyone has had PRP and found it helpful.  I have just had my first session and wondering whether it is worth the expense. Also, wondering if anyone uses Minoxidil on their eyebrows? thanks

Comment by Sad in chicago on December 13, 2014 at 11:37pm

Regarding the dry eyes: Put genteal night moisturizer for eyes in before bedtime, it is sort like vaseline for your eyes, and then use Systane eye drops first thing in the morning before you get out of bed......this all helps.  My eye doc turned me on to it.

Comment by MJ on December 11, 2014 at 9:36pm

Marilyn, that would be great!

Comment by Marilyn on December 11, 2014 at 8:47am

MJ

I'm not a member but would certainly join and have no problem attending a meeting with you-I would look forward to meeting someone who is experiencing the same diagnosis!

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