Frontal Fibrosing Alopecia

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Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

Location: Dubai UAE
Members: 207
Latest Activity: on Monday

Discussion Forum

Fact sheet

Started by lara. Last reply by MJ Dec 9. 2 Replies

Hello,Could you mail me the factsheet in a private message ? I added you as a friend since i didn't know how to contact you otherwise...Many thanks in advance!Continue

Hydrochlorothiazide or Microzide (Brand Name)

Started by Terri. Last reply by Terri Dec 9. 13 Replies

Hello to all alopecia sufferers, I want to describe my case to see if anyone else has had the same experience.I started losing my eyebrow hair and some of the hair around my hairline, so I went to my Internal Medicine physician who referred me to a…Continue

Tags: Hydrochlorothiazide

FACTSHEET FOR FRONTAL FIBROSING ALOPECIA

Started by Debs. Last reply by Terri Dec 9. 7 Replies

Ladies, I have typed up a factsheet on FFA.  I will keep it updated.  It is difficult and time consuming to read back over past posts for new members of the group, so this factsheet will cover most questions that we ask when first diagnosed.If you…Continue

Thoughts on Surgical Hairline Lowering Procedure for FFA

Started by LoriC. Last reply by sallylwess Dec 5. 2 Replies

Hi Everyone - I have had FFA for about 6 years now. I am doing research currently on solutions to fixing the problem like transplants or something I recently heard about..."surgical hairline lowering procedure". This Doctor (whose info I have listed…Continue

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Comment by Alice on Monday

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 Monday
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 Monday

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 Alice on Monday

I have found that Rx Restasis drops have helped my dry eyes. I tried the Genteel goop but it made my vision very blurry, even with drops in the morning.  I also tried punctal plugs, which are like little stoppers for the tear ducts, so they don't drain down your nose but they didn't stay put. I resisted starting Restasis because it is expensive but found that the single use vials have enough in them for 2 days. If you're using lubricating drops, be sure to get the kind without preservatives, as it can be irritating.

Comment by Sad in chicago on Monday

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 Monday
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 Sunday

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 Sunday
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 Sunday
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 Sunday

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

 

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