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Comment by Celia on December 20, 2014 at 1:00pm

Happy Christmas everybody !

Love Celia X

Comment by Alice on December 15, 2014 at 5:39pm

Anne Louise, I am so sorry to hear about your macular problem. I have been told that the opthalmalogical side effects are reversable once the Plaquenil is stopped, so I hope that is the case for you. I've cut my dose down to one tab per day and can't tell any difference. My scalp is red, bumpy, and itchy no matter what I do. 

Comment by Anne Louise on December 15, 2014 at 1:43pm

Well what I thought would be an innocuous conversation about dry eye turned into an hour and a half anxiety ridden optometry appointment. Turns out I have some changes in my macula that were not there 6 months ago. I've only been on Plaquenil for 9 months but already have early signs of retinal toxicity. This, I've been told countless times, is an exceedingly rare side effect and is more likely to happen after being on the drug for several years. I guess I shouldn't be so shocked as I have a history of falling into the "rare and unusual" category. Ovarian cysts rarely rupture; mine did. It is unusual to get mono in your 30s; I had a pretty bad case at 31. Thyroid nodules are benign 95% of the time...well I was in that 5% category. And we all know how rare FFA is, especially before menopause. I guess I should take heart in being a rare gem! Thanks for letting me vent, nice to have an audience who understands.

Comment by Annie on December 15, 2014 at 11:06am

NatalieW, I have also been using Minoxidil on my eyebrows since my diagnosis in March 2013.  My doctor said at my last visit that he could see no sign of ffa in my eyebrows. He also said that it is his experience that if eyebrows are affected it will be earlier in the ffa process, so he is hopeful that I won't lose mine. 

Comment by Sad in chicago on December 15, 2014 at 12:04am

This advice from my eye doc might have gotten lost with all the replies.....before bed, either genteal night time moisturizer (also systane brand) which is like putting a smidge of vasoline like goop in your lower lid.....makes things foggy for a while, but works really well, and then upon awakening before getting up, a drop or two of systane moisturizer, let it roll around and moisten the recesses of your eye,  it is cool and refreshing.  Helps much with dry eyes.  I am still wearing my contacts too, thank goodness.  On top of no eyebrows and a thing on my head, I will die if I needed my glasses every day too!

I know two people with Sjorgen's.....none of them have hair loss.

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.

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