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Comment by Celia on October 29, 2014 at 7:08am

Hello Sas - welcome to this site. It seems that in many cases the eyebrows are the first areas to disappear, SOLUTION - TATTOOS . Eyelashes can go too, or at least severely thin. SOLUTION  you can have the eyelids tattoed - I just use a pencil. Self esteem also is affected - SOLUTION - support from friends and this site. Hairloss at the front and above the ears - SOLUTION - there are bespoke hairpieces that can be made - fantastic ! Have you read the info sheet that Debs created on this site ? Have you got a good dermatologist ? Where do you live ? Best wishes X

Comment by Sas Holland on October 29, 2014 at 6:03am

 I  mistakenly posted my questions on my discussion forum, but I think this is a better place isn't it?

I still have so many questions, since I got my diagnosis not very long ago, I am happy to have found this forum

 For instance does anybody know if it is hereditary? Are there cases known where both mother and daughter(s) have FFA? Or is it also possible that you can loose eyelashes too?

Comment by Annie on October 28, 2014 at 10:48am

MJ, I can see a light flaking on the areas affected by ffa, almost like dry skin.  I've also noticed it on my arms around the hair follicles.

Comment by MJ on October 28, 2014 at 6:14am

Annie,
That is great news! I am curious as to what scaling looks like. I had been told scaling was visible too, but I have never experienced any redness or aggravation and I donT visibly see any scales. Is it something you see with magnification?
MJ

Comment by Annie on October 27, 2014 at 1:03pm

Hi All, I just wanted to update you on my 6-month appointment with my derm last Friday.  After taking plaquenil for 15 months, my doctor said he is very pleased with my progress.  My ffa has not burned out, but it has stabilized.  He could not see any evidence that it has spread since my last visit.  I still have some scaling in a couple stubborn spots, but very little redness.  I am to remain on the plaquenil / topical steroid program and see him again in 6 months unless I experience a flareup.

Comment by Jodie UK on October 23, 2014 at 6:02am

Pam, the drug I have been prescribed is called Toctino in the UK, it is mostly used for chronic hand eczema, I don't know if any other FFA sufferers have ever used it, or if I am a guinea pig for this experiement. It's early days so I don't know if or how effective it will be, but will keep the group informed.
I am so sorry about your problem, but I also agree it sounds more like an allergic reaction to something.
PS- Just back from wonderful holiday in San Diego, you live in an amazing city, I Love it

Comment by Classical Anne in NC mountains on October 22, 2014 at 11:10pm

Pam, please go see your doctor [not necessarily your derm] !  That kind of itching, including palms of hands sounds like a bad allergic reaction.  I've been there too often, and it's not a happy place.  Something you are taking/doing is not right for your system.  I hope you find relief soon.  Don't try to ignore the symptoms -- you may end up needing adrenaline injections to help flush it out of your system.  Best wishes!!

Comment by PamW San Diego, CA, USA on October 22, 2014 at 10:59pm

Rebecca and Jodie, is cellcept the same as cyclosporine? Also can you tell us more about the new drug you are being prescribed? My doctor in San Diego did her residency at Dr. Christos hospital. I am having a terrible few weeks with itching and burning. Not just my scalp. My ears, neck, palms of hands just itch all the time. I am desperate for relief.

Comment by Jodie UK on October 22, 2014 at 10:06am

Rebecca- I'm glad you have no adverse reaction to cyclosporine, because I can honestly say it was the only thing I have taken that I felt had any positive effect on FFA, but I am also unable to take plaquenil, because I have a bad reaction to this drug also, so my body must have a low tolerance. I've had FFA for more than
8years now, and I go between swearing I will never try anymore drugs to treat it, to being so totally depressed and desperate that I end up taking whatever else my doctor recommends I try next.

Comment by Jodie UK on October 22, 2014 at 9:23am

Rebecca- it was mostly my kidneys that were affected but was also starting to affect my liver to a lesser degree, I also grew fine dark hair all over my face, but I was strictly monitored, blood and urine tests every week, then the dosage was lowered and I attended for these tests every 2 weeks, but my derm and I came to the decision, I was not a good candidate for this drug and it was stopped, after a couple of months. Everything was back to normal within a few weeks after stopping taking it, but as I said we all react differently to different drugs, what works for one person may not work for another, I don't mean to scare anyone, and I'm sure your doctor will monitor you very closely.
Rebecca did you get a fact sheet before you started cyclosporine detailing all the side effects? I had to read up on it and answer questions from the fact sheet before my doctor would prescribed it to me.

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