Alopecia World
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Man with FFA. New member.
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.
Replies to This Discussion
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Permalink Reply by Thomas on
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Sorry, forgot to mention that I'd be happy to hear other peoples experience, particularly how far the conditions progresses, successful treatments and any recommendations for specialists in and around London. Does anyone know if FFA progresses and/or is treated differently in men?
Thanks,
Thomas.
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Dear Thomas, thank you for this post. It is so interesting to read your message. I too have seen Dr Farrent and he seems to have quite set ideas about sun screen and the link with FFA. I resently went to Gyes and saw a specialist there. It just seems to be all up in the air what has caused this horrid condition. I am now off all medication as I've tried everything with no
Improvement.im going to have the interlace system fitted in a few weeks which I hope will make me feel better about the hair that has gone. I wish you all the best. -
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Hi Claire Julia
I also saw Dr Christos Tziotzios at Guy's in London. And I have asked my GP for a referral to the Dermatological team at Guy's (apparently, referral is not straight forward - the decision has to be made by a Panel!!!! I am not amused that I have to wait - again - :( )
xOx -
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See the good news story just posted in the ffa burnout story discussion. I am new to this myself with same curiosity. Good luck.
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Permalink Reply by Christi Q. on
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Enjoyed reading your story. I live in the Land of Oz in the USA......with FFA. No wizard here to save my hair though:(
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Hi Thomas
I have just read your post. Interesting also as, being recently diagnosed, I hadn't realised that men can have this crappy condition too.
Your post comes across as very positive. I have medication but not to hand at the minute to write down the names of each one. I am looking at the auto immune protocol diet - I need to read the book that I bought.
Best wishes - stay positive.
xOx -
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Hi again,
My present meds are:
1) Hydroxychloroquine sulfate 200mg tablets twice per day for 8 weeks.
2) Dermovate - clobetasol propionate - ointment for scalp - when necessary (?) up to a
max of twice per day.
Not sure about the side effects of these but will take for the initial 8 weeks till my appointment in Feb 2017. Also, not sure if they are helping as my hair loss seems to be increasing :(
I am also taking turmeric in the form of Golden Paste:
Recipe - http://deeprootsathome.com/how-to-make-use-turmeric-golden-paste/
Tuemeric has inflammatory properties - so hoping this will benefit the condition.
I also need to look more into the AIP diet (auto-immune protocol).
xOx -
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Permalink Reply by Liz on
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Hi Thomas
Welcome to this group. It sounds like you've done a lot of research yourself and hopefully you'll find some helpful bits of information on the posts within this group. I imagine FFA impacts men in a similar way in many ways as it does a woman. I dont think that becuase you are a man your feelings are any less valid. There are many different feelings about having FFA amongst the people in this group and just as many varied ways of trying to cope with it. Some make use of medication , others with natural therapies. One thing that we all try to do is minimise the stresses in our lives as far as is possible. I am 45 and was diagnosed by Dr Farrant when I was 40. My mum also has FFA. I have lost about 3-4" of hair and now have an intralace system which is fabulous but costs a fortune. I dont take any medication for FFA and I try to minimise the stress in my life which isnt easy. I have also seen Dr Harris who wrote an article on FFA in a newspaper a few years back. I have also seen Dr Wong and Dr Christos at Guys who is researching FFA.
xx
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Liz, what is an "interlace system"?
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Thank you all for your comments, it’s good to hear from others in the same boat.
I’m putting together a timeline of the last 5 years to document the symptoms and measure the rate of progress. Definitely lost 9 – 10mm since I first starting taking accurate measurements. If there’s no improvement by March, I’ll step up the treatment and use the time to research finasteride, the immunosuppressants with least adverse side effects and Excimer laser.
The photos of progression are quite interesting and might be to others as a point of comparison. I’ll post them up when prepared.
Until then my hair is being grown long wherever it will grow. My girlfriend says the best I can hope for is the ridiculous result of Harry Potter joining Sons of Anarchy!
Thanks again.
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Permalink Reply by DragonandFox on
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Tomas,
A while ago, I created a document for people to add their info re: FFA/LPP to.
https://docs.google.com/spreadsheets/d/1aeFfbgrTwmr0v-kWpWX0gSJk06U...
If you want to add your info let me know I can open it for you to add. It has to be kept closed because it was hacked sometime ago.
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Permalink Reply by Sas Holland on
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Hi Thomas,
I just read your story with a lot of interest, thanks for sharing. I didn't know this could affect men as well.
I hope your treatment will work for you!
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