FFA Flare Ups -Anyone?

I was first diagnosed with FFA in September 2016 during a routine skin check. I had previously noticed a few stray hairs on my clothing, but didn't think too much about it. The diagnosis devastated me. My dermatologist recommended steroid injections into my scalp along with a topical steroid. I received the injections every six weeks until April 2017, when I was diagnosed with breast cancer. At that point, my dermatologist stopped the injections to allow my body to heal from surgery and radiation.

In July 2017, around the time I was receiving radiation, I noticed that I had some regrowth. My hairline didn't revert back to its original state, but it filled in with new, healthy hair! My recession halted and my hair started to look healthy again. I was ecstatic! I believed my FFA had reached "burn out" status, and I was through with that insidious disease.

Fast forward to a week ago, February 2019... I started to notice a few stray hairs on my clothing, and the other night, my scalp started to itch. Although I haven't had a confirmed diagnosis from my dermatologist, I am convinced that the FFA has flared up again.

Has anyone else experienced this? At this point, my hairline has receded an inch along my forehead and 1.5 inches along my temples? What can I expect as far as further hair loss from an FFA flare up?

Thanks in advance for any advice you can offer!

Tina

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Replies to This Discussion

Permalink Reply by Kandy15 on March 4, 2019 at 5:21pm

Tina,

Wow, you have really been through a devastating 2 1/2 years with the double whammy of breast cancer and FFA.  I hope that the cancer is in remission especially now that you have to contend with a FFA flare up.  

I was diagnosed by biopsy in April 2016 with lichen planopilaris.  I lost about 1 - 2 inches of my hair along the sides of my head from my temples to my ears.  I was prescribed oral doxycycline and topical clobetasol and although I don't think it really helped, the hair loss stopped after about a year.  I was so relieved and thought I could just go on my merry way of enjoying life.

Until...............this past November 2018.  I noticed a rash on my forehead hairline which concerned me so back to the dermatologist I go.  Now I have been told I have FFA which is a variant of LPP.  I started the doxy and clobetasol again with no results after 2 months and the hairloss has been rapid.  In January I started Plaquenil but still see the rash and have hair loss.  They say it could be 6 - 12 months before I could see results as to whether the Plaquenil is working/helping.  I can't imagine how much more hair I will lose until I may or may not see results.

This stupid FFA is so depressing and I am so sorry that yours has flared up again.  I'm glad you have reached out to the ladies on this forum.  I have found a lot of support and good ideas from all of these brave women.

    

Permalink Reply by Tina S on March 4, 2019 at 8:05pm
Hi Kandy!

Thank you so much for reaching out! I appreciate your kind thoughts, and wish you well with your current round of FFA.

I can totally sympathize the relief you felt after believing your experience with LP was behind you, and the crushing feeling once you were diagnosed with FFA, and faced with additional hair loss.

From reading posts on this site, it seems as though there is no "magic bullet" when it comes to treating FFA. Both medication and diet have produced mixed results for the women who have shared their experiences.

I hope Plaquenil gives you the results you are hoping for. I have an appointment with my dermatologist tomorrow and will see what she recommends.

Thank you so much for sharing your experience with me. I truly appreciate you opening your heart!

Tina

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