Comment

Comment by illustr8r on August 22, 2017 at 1:26pm

I have a square'ish red dent near my left temple and several red blotches along my hairline nearby. I swear this stuff- just when you think things are going okay...! Not sure if this is reaction to the Clobetasol or some other stupid phenomenon related to this stupid disease!!!  

Comment by illustr8r on August 18, 2017 at 8:03pm

JRT I have been on the AIP diet since July 2nd. I feel so much better. More energy, better mood. I feel like the hair loss has slowed and my hair is more shiny and healthy looking than it has been for a long time. My hair was shedding-seeing it fall in front of my eyes when I was working on my computer. That has stopped. All the best to you...:)

Comment by Dee on August 18, 2017 at 7:57pm

I've been on a gluten free diet and trying to follow the paleo diet as well approximately 3 months and I do think it has helped.   The frontal area hair loss has slowed down and the rest of my head hair is much thicker and healthier.  Hope this helps.  

Comment by sallylwess on August 12, 2017 at 7:34pm

Thank you for this information Airam.  I will look forward to hearing about your appointment.

Comment by Airam-FFA on August 12, 2017 at 4:00am

Hi Christi Q

I will post after my visit.

oXo

Comment by Christi Q. on August 11, 2017 at 11:48am

Please keep us informed regarding your appointment with Guy's!  Thank you Airam-FFA

Comment by Airam-FFA on August 11, 2017 at 1:03am

Not sure about this drug either - this also sounds like it has horrendous side effects:
https://www.drugs.com/cdi/tacrolimus.html
I have come to the conclusion that the loss of my hairline is the better scenario

After nine months of asking, I have been referred to see the Dermatologists at Guy's in London - they treat a lot of cases of FFA so I am eager to hear what they have to say. (My GP practice refused my request - they said basically said that any treatment for FFA didn't have much success :/ so they were not going to fund me getting a referral to the specialists at Guy's. This news was very disappointing - in fact devastating:(

I was eventually referred by my new dermatologist - as she is very keen to learn as much as possible about this condition - FFA. This is a very much appreciated outlook after the negativity I have experienced with the previous dermatologists I had seen.

Trying to stay positive and eat healthily in dealing with this crappy condition.

xOx

Comment by Jules Australia on August 8, 2017 at 11:01pm

Just wondering how many of you seem to have diffuse lichenplanopilaris az well as ffa. I have areas of tenderness & sometimes a splintery pinprick pain over top of my scalp. Also last few months have had painful tinyl pimple like (think described as papules in research articles) in many spots all over scalp (top, sides, back, behind/above ears & recently a couple near nape of neck); does anyone experience these.. My   scalp dysesthesia can be anything from just mildly tender (sometimes itchy) to uncomfotably tender; feeling at times in some areas of splinter stuck just under skin  (guess this is from inflammation innervating nerves around follicles)......often have mild itchy sensation along front hairline, & lately along eyebrow area (even tho majority of eyebrow hair lost).....last few days have had a very itchy pinkish red rash on neck up to under chin & across collarbones....don't know if its all connected but presume probably is.......some days (Many, espec of late)..... I struggle with this ghastly disorder..... appreciate all your comments....v difficult having a disease that noone aroundyou (in person) can relate to, let alone NEVER having heard of......i believe i have both lpp (diffuse) and ffa.... appreciate your comments thanks jules

Comment by Minter on August 6, 2017 at 8:24am

Brooke, that is interesting and thank you for sharing- I have given up on taking anything orally for FFA as I seem get every side effect that is listed, but a topical is something that might work for me- I am going to speak to my Dr about tacrolimus at the next visit. I am happy for you that something is actually working against this FFA!

Comment by Dee on August 5, 2017 at 9:11am

Brooke, thanks for sharing the encouraging news about the liquid tacrolimus.   Can you tell me how to get that?   Is it a compounded drug or can you get the liquid form from any pharmacy?

Thank you!

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