Hello,

Thought I’d share my experience, as one of the few men with FFA, in the hope that it will be useful to others. It’s possible that the condition progresses and responds differently in men. I’m 40, live in London and otherwise healthy.

I first noted thinning to the outside edges of my eyebrows 4 years ago. My GP dismissed it and when I requested a referral to a dermatologist, was told it was alopecia due to stress and would probably go. By this point (November 2016) I had some temple papules, thinning hair over my ears and a somewhat receding hairline (that could also partly be due to general age related hair loss). My hairline has some scaling and is itchy but perhaps no more than normal. My facial hair is 90% gone (no more shaving which is cool) and I’ve lost 50% of my arm and leg hair (a bit weird but OK).

Not happy with their diagnosis, google research suggested LPP/FFA and so I found a dermatologist that specialises in this field (Dr Paul Farrant). He confirmed I definitely had FFA, that treatment options were limited and the progression difficult to determine. Sometimes it burns out after 2-10cm of loss but it’s not been around long enough to be sure of this outcome. Causes are probably multi-factorial but not known for sure and incidences are on the increase.

My response was to panic a bit, obsess about researching the condition, sulk for a few weeks and resent my traitorous immune system for attacking my body.

Before taking a prescription this was my research on treatment options. N.B. I’m not a doctor and have just summarised the information I found (which may be inaccurate)

-  Steroids (Dermovate) and topical (immunosuppressant) creams to reduce inflammation. Not without issues but fairly benign.

-  Hydroxychloroquine or doxycycline tablets to treat inflammation. Similarly ok too.

-  Mycophenolate or azathioprine as general immunosuppressant. Pretty hardcore drugs with common side-effects.

-  Finasteride and Dutasteride, which inhibit the enzyme 5 alpha-reductase that converts testosterone to dihydrotestosterone. Usually used by men for enlarged prostate or general hair loss.  Finasteride is possibly less powerful than Dutasteride for general hair loss with possibly less side effects. Both appear to be similarly effective to treat type I which is predominately found in the scalp and sebaceous glands i.e. probably more relevant for FFA.

-  Excimer laser light treatment. This can be successful in treating psoriasis and there are some examples of it being successful in treating LPP/FFA.

-  Microblading for the eyebrows. This looks really good and something I’ll do at some point.

For the last month I have been taking daily doxycycline and I’m applying Dermovate and Protopic on a daily basis for the first month before progressing with 3 x weekly application. There are no side effects and the inflammation has reduced significantly along with papules being around 40% less visible. I’ve been measuring my hairline and taking photos to determine if it is halting the hair loss (currently inconclusive). Another check-up in 3 months to review.

-  Causes:

There are a number of things that happened at around the same time as the condition started: Stress (parents died), lots of vaccinations when I went travelling (hepatitis, typhoid, rabies, yellow fever, tetanus), my daily moisturiser had synthetic SPF sunscreen and I used other toiletries that I now know my skin doesn’t like (cologne, deodorant).

-   What next:

I want to keep my hair but not at the risk to my health and so I’ll keep trying this treatment for 6 months but don’t want to put these chemicals in my body long term. I think I’d be ok with Finasteride and excimer laser but don’t want to take powerful immunosuppressants.

My diet is now cleaner by cutting out processed food/sugar and ensuring optimal nutrition. No more alcohol. Only non-allergenic toiletries (www.ewg.org is ok but also just google the ingredients of anything you put on your skin). These are all sensible health changes I should make at 40 anyway and now I’m not drinking I’ve increased exercise from 3 times a week to nearly every day.

Need to try to be less self-conscious and remind myself that there are far worse life threatening conditions (more easily said than done, I know). Don’t want to be presumptuous but this condition is perhaps not as impactful for men? I’ve had closely shaved hair before, and so if the condition can’t be halted, I’ll take control and clipper it off myself - Screw you FFA, didn’t want my hair anyway! Finally, some people have had amazing looking henna tattoos on their scalp, not sure this would work for everyone but the idea of turning your head into artwork can turn out awesome looking.

Really sorry for everyone that has this condition and know how frustrating it can be. Hopefully treatment will improve, until then, best wishes.

Thomas.