Replies to This Discussion

Permalink Reply by RoxyT on June 30, 2019 at 1:21pm

Hi, Lu. Yes, I have both FFA and vulvar lichen sclerosis. For about 18 months, I visited dermatologists showing them scalp and vulva. I eventually stopped having them look at the latter because 7 different docs told me I was "normal," and I felt humiliated. Then when I was diagnosed with FFA in January, I figured there was a good chance I had lichen planus and  resumed the search for someone who would take my pain seriously. I found a gynaecologist who specializes in post-meno patients. Pathologist said biopsy is lichen sclerosis. I've been using clobetasol cream and an estrogen cream. It's gotten a little bit better. I see the gyno for a follow-up next week.

Let us know how your treatment goes. I wish you the best. 

Permalink Reply by Lu on June 30, 2019 at 8:23pm

Hi Roxy,

 I haven’t been diagnosed with anything else ..yet..

After 5 months of using clobetasol ointment daily, the dermatologist has started me on a month of prednisone to try to settle it. Before I saw the dermatologist my GP had me using a much weaker steroid cream which helped very little. I have noticed a huge difference with the prednisone... stopped taking it for 3 days (as I thought it may have been masking a different infection) & the LP is flaring up again. Don’t want to be on steroids forever so hope going back on it for a few weeks will stop the cycle. 

Permalink Reply by RoxyT on June 30, 2019 at 2:38pm

Lu, I forgot to to ask: Do you have hypothyroidism,granuloma annulare, and/or Ehlers-Danlos?

Permalink Reply by Toby on June 30, 2019 at 2:39pm

There is a study done in 2019 that found FFA is more like Alopecia Areata than LPP as previously thought.  A person with Alopecia Areata can loose hair in other parts of the body besides the scalp. I lost the hair under my arms and lessening of hair elsewhere. I take slow release iron tablets every 2 or 3 days with vitamin C for better iron absorption. My iron was not low, my dermatologist just wanted it higher. The hair on my legs returned. My underarm hair is gone for good. Hope this helps.

Permalink Reply by Lu on June 30, 2019 at 8:23pm

Hi Toby,

Do you have a link to that article? I’d be interested to read it. 

Permalink Reply by Toby on June 30, 2019 at 10:55pm

The easy to understand article is on Dr Donovan’s website titled “4 Genes identified in Frontal Fibrosing Alopecia” dated March 11, 2019. Website is donovanmedical.com.

The scientific study is on website http://wwwguysandstthomasbrc.nihr.ak.uk/2019/03/08/scientists-iden

Permalink Reply by RoxyT on July 1, 2019 at 6:24pm

Toby, thanks for sharing the article and your results with taking iron. 

I was able to regrow some eyelashes and hair on my arms, legs and public area with oral minoxidil. I have some regrowth on non-frontal part of my scalp. I'm guessing the non-frontal loss has AGA/female pattern. Doctors are unsure what it is.

Permalink Reply by SandyA on July 4, 2019 at 9:41pm

Interesting about your hairloss....I lost all the hair on my arms and almost all on my lower legs and front thighs (just a couple stray individual hairs around the knees) but not too too much loss on the sides and back of thigh.....and I still have all my underarm hair. Not having to shave my legs as much is the only part of FFA that I don't mind and I'd certainly be OK if my underarm hair disappeared too. (But don't get me wrong, I would rather be as hairy as a gorilla if that meant getting my hairline back.)

This disease is utterly baffling....why does it pick on only hair follicles in certain other areas of the body beside the hairline and not others? And why does it attack different areas of the body from patient to patient (if at all)? Wish there were more researchers who were just as curious.

Permalink Reply by SandyA on July 4, 2019 at 9:46pm

My post was mostly directed to Toby about her hairloss....I am unable to reply directly under her post nor edit my previous post. Sorry for any confusion.