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 DragonandFox on
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Thank you for posting such a thoughtful, concise message Thomas. You nailed it! Keep perusing the group for comparisons, suggestions and news. Good for you that you're making all the necessary changes and for the work you're doing on attitude.
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Permalink Reply by Thomas on
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Hi All,
I met with Dr Christos Tziotzios in the UK today and recorded some notes from our meeting. I may have misquoted him and he was not giving clinical advice, but an insight into his experience and the data already in the public domain i.e. please don’t take what I’ve written too literally. Dr Chistos is conducting a study on FFA http://www.carfintl.org/trials-studies.php. They have >1000 participates and he has seen around 500 cases over the years.
FFA hair loss progression is usually body, eyebrow then hairline. Sometime simultaneously, others over the course of many years. There is probably a genetic predisposition to FFA/LPP and the condition is likely activated by any number of factors. It appears to be triggered by hormonal changes e.g. oestrogen may play a protective role and so menopause, hormone mimicking agents (like chemical UV filters), hormone imbalances (growth hormone, testosterone – which may present themselves symptomatically) can make the condition active e.g. there is some evidence that oestrogen lowering agents like tamoxifen can be an activator.
LPP is a condition that has been recorded in very early medical records and so it is likely that FFA, whilst underreported, has been around for longer than we think. Men tend to be less than 2% of cases but probably don’t report it as hairloss at 40 is not unusual for men.
It is thought that the mechanism for the disease is that bulge located stems cells lose their immune privilege where the auto-androgens are attacked by the immune system. In addition to this, the stem cells do not like the inflammation and commit suicide. Understanding this mechanism helps treatment i.e. if you limit inflammation you reduce the suicide rate and if you can suppress the immune response, you can limit how much you immune system attacks the hair.
This means that it is difficult to reconcile how, at a mechanistic level, 5alpha-reductase inhibitor (Finasteride) would help in this case. It is likely that any hair regrowth is stopping androgenic alopecia, not the FFA. That said there may be another mechanism happening that we are not aware of. Accidental cures are sometimes found this way.
There are lots of different anti-inflammatory and immunosuppressant gels/creams. Different people react more favourably than others and have differing side effects so it is a case of experimenting to see what works for each person. Systemic treatment like tetracycline’s (doxycycline, hydroxychloroquine etc.) may prove effective in reducing inflammation, hence cell suicide and have shown to reduce the skin papules.
The disease tends not to burn-out on its own accord but continue, albeit very slowly. If a person is able to reduce the visible symptoms in the hairline and no loss is recorded for a prolonged period (3-12 months), then it is likely that you have found a treatment that will minimise future loss. There does not appear to be much evidence that it will progress at an aggressive rate and remain in remission if you maintain the treatment. Dr Christos did not want to give exact figures but I pushed on a % of around 50% that achieve what appears to be permanent stabilisation.
Other things that will probably help mostly relate to healthy lifestyles that stop inflammation: No nasty chemicals on your skin, less pollution and a healthy diet avoiding inflammatory compounds (AIP diet possibly).
I’m measuring my hair weekly and taking HD photos of my hairline so I can identify a group of 10 individual hairs to monitor their miniaturisation or loss. Since treatment started on January 1st, I do not appear to have lost any further hair. If this continues until the end of the year, I will continue the treatment and consider myself (technically) in remission.
Understanding the genetic markers and the mechanism for this will hopefully lead to a solution. Dr Christos seemed hopeful of an eventual solution but it might be >10 years, possibly more. There are lots of fascinating studies on stem cells and regrowth of individual human cell types that give me hope that I’ll get new hair at some point in the next 20 years. Others on this forum suggested self-medicating with wine so maybe we should get new livers at the same time as our hair!
I’ll continue with topical corticosteroid and immunosuppressant along with tetracyclines and update at the end of the year. All the best to everyone suffering this condition.
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Permalink Reply by Christi Q. on
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Thomas, thank you so much for this detailed report. I really enjoyed reading it!
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No further hair loss at my recent 7 month check-up and little sign of the redness, scaling or itchiness I had in December 2016. I am currently in a very fortunate position, although things could worsen again. If the condition remains stable for another 12 months, Dr Farrant suggested seeing what happens if we stop the medication. It seems for now that after around 4 years the condition has stabilised – possibly temporarily. I can still feel a slight irritation/tingling and so know it’s still lurking there.
Whilst everyone will respond differently, I’ll share my approach in case it helps others:
-Dermovate crème twice a week. This helped with the itching and inflammation, although whether it stops the underlying condition is debateable.
-Protopic (tracolimus). 2-4 times a week (the night before I wash my hair).
-Hydroxychloroquine. 200mg daily. Taking this long term, particularly in higher doses can cause eye damage, although it would be rare at this dose for so short a period.
I’ve not had any adverse reaction to these medications.Other things:
-Diet. Little to no processed food or sugar. Lots more fruit and vegetables. Far less alcohol (a night boozing did seem to really irritate my body).
-Cosmetics/toiletries. Mineral based sunscreen such as Zinc or Titanium, not oxybenzone, octinoxate etc (chemical based ones give me very irritated skin – this reaction started 4 years ago). Fragrance free and with as few additives as possible toiletries (Faith in Nature product range seem to have mostly benign ingredients). Can’t say if this has helped with the FFA but I no longer get welts after showering as when I use fragranced products. Only spray perfume on outer clothing, far from my skin.
-Exercise 5-6 times a week for at least 45 minutes. This may not help the condition directly but gives me a much more positive/resilient outlook. Not being hungover once or twice a week makes this possible.
Some other benefits are that my skin is a lot less dry, seldom ever with welts and the occasional bouts of mild eczema are non-existent. Stress affects how itchy my hair feels. I enjoy being busy at work but need to exercise afterwards or the stress based irritation takes longer to subside.
My body clearly doesn’t like artificial environments or harsh chemicals, so anything that reduces this can only help dampen the autoimmune response. When out of London’s not particularly clean air, my skin/eyes/hair are noticeably less agitated.
I’ll report back if things change and at my next check-up in 6 months. Best wishes to everyone.
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Permalink Reply by Halfbakedwho on
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Thank you, am a relatively new member and read the whole thread. Your explanations are very helpful, especially in understanding how anti inflammatory medicines function to save the hairs.
Your diet still includes gluten and milk products then? Am curious. I also get eczema with stress (especially when I travel).
Thank you again, cheers
Cara -
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Hi Cara,
Glad you found it useful. I should caveat that I’m just relaying the opinion of 2 doctors and I may have misinterpreted some of what they said. As with many immune disorders it seems that there’s lots of guessing and that there’s no definitive view on cause, treatment, prognosis etc.
Neither gluten nor dairy seem to cause me issues, I’ve tried cutting them out for 2-3 months, to no effect. A combination of stress and travel is not good for my skin. Put me up a mountain or on a beach, with not much to do and the irritation does subside.
All the best,
Thomas.
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The disease appears to still be in remission (5years now) and can be considered to be 'burnt out'. The accutane did a good job of clearing up the papules too.
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Thankyou for you detailed response, please keep posting, well done with positive health changes
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Wow Thomas, you have done all the homework that I have, I'm a female , whilst my hair hasn't been of the lush variety, the thought of being bald isn't appealing either. The photos in medical journals of women with FFAi are totally scary. At this stage , I'm in denial/yes it's happening stage, have changed sunscreen, makeup, hair products, diet..have reduced alcohol, looked at autoimmune diets..yes realised get a grip I'm not dying...but still for a female hairloss is significant, sorry guys but it is more acceptable for you. Saying that I still respect your loss of hair...needless to say after all this rant, I am undecided re meds due to side effects and definitely in the angry annoyed stage of acceptance of the horrible disorder...PS all else is going swimmingly in my life, I am very lucky
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Hi Jack, Plf,
I’ve no noticeable hair loss for around 14 months now. My dad and grandparents had normal male pattern baldness by my age, so I need to be mindful of the impact of this rather than FFA.
The hair loss seemed to follow a sequence: eyebrows, body, facial, top hairline, side hairline. My eyebrows, body and facial hair loss has not progressed for over 2 years, front hairline 14 months and temples/over ears more recent (still a little itchy but barely noticeable). I’m hoping that as the hair loss followed this sequence the apparent burnout is also sequential (my dermatologist thought this a reasonable assumption).
Doubled my hydroxychloroquine intake and use dermovate + protopic 2-3 times a week, all with no adverse issues. The biggest impact on my wellbeing is the clean diet, exercising hard nearly every day (muaythai and crossfit which probably suppresses my immune response) and ridding myself of all chemicals on my skin, home and diet.
Plf, yes bald is less of an issue for men and I would happily shave my hair to a grade 2 and use micropigmentation tattoo treatment for any totally bare spots.
I have a course of Accutane that I’ll use when the winter is over (I’m in the Alps a lot until May with high UV and chapped lips which is not good when you’re on retinoids). All indications suggest that this really helps clear up the (mild) papules and bumps I have on my temples. I’ll let you know how it goes and post photos documenting the disease progression after the summer.
Hope this helps.
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Hi Thomas,
thank you! I'm so glad to read that you're well. Keep us posted.
Losing hair of my scalp, arms and legs doesn't bother me, but losing my eyebrows and eyelashes hurts me, even though I'm a man. I wish there would be a possibility to keep them.
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