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FFA diagnosis
Hi - new to this group. I am 64, realised my hair was disappearing around three years ago, when my eyebrows seemed to suddenly go. The GP tested for thyroid and did general bloods, but then told me it was 'my age'. Thanks. Eventually, when it became clear that my hair was also receding (in the classic FFA pattern), I sought further advice, this time from the Dove Clinic (UK - integrated medicine). And Julian Kenyon there told me I had FFA and that it was linked to the lichen planus I was diagnosed with years ago.
Along with the hair loss, I had digestion problems and a general feeling of weariness and being 'under the weather'. Julian explained how my immune system was going overboard, hence all the symptoms. He gave me various treatments, including Immiflex which helps the immune system.
But in essence, he said, there is nothing that can be done to get the hair back.
I am now looking at weaves and the like, as I HATE the whole thing. I am super conscious about it - far, far more than I ever would have anticipated. And, unlike many young women, an older one with no (or receding) hair just looks ill or ancient!
But, having found this group today, it looks as if there are some treatments. So .... do I go back to the GP and demand to see a specialist? Do I spend more money on complementary therapies, and if so, what? Or do I accept this with good grace and, as someone has posted earlier, recognise this is not the end of the world? Argh.
Replies to This Discussion
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Permalink Reply by Lo on
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Hi, Denise... and welcome. Yes - a hard blow to the ego and heart when you hear this diagnosis, for sure. I am 44 and started losing my hair at 39... eyebrows first, then hair above both ears... and since then it has made its way around my frontal hairline... worse at ears and temples than front forehead - but still going. I went 4 years being told it was alopecia areata... until I finally insisted on something else being done... as it was not coming back... and I couldn't understand why. My new derm said she could test for scarring alopecia - and an FFA/LPP diagnosis followed. That was 13 months ago. Since then, I have tried plaquenil (did not work), and am not on Celcept (immune suppressant) along with Actos (a diabetic drug that showed some promise - but it is "iffy"). I will remain on these for 18-24 months and if it does not seem to be working, I will stop. I am still able to hide my hairloss with a shorter bob-style cut pulled forward... time will tell.
I think you should do what your heart tells you to do. If you don't mind taking the meds short-term to see if they halt or slow the loss, I say go for it. Just talk to your derm about the side effects and decide from there.
With our without medicine, though... I do think you eventually have to come to terms with the diagnosis... it is hard at any age... There are some young women I know (late 20s early 30s) who are devastated because they are so young... and others who are middle aged (like myself), who fear many of the same things you (and the young gals) fear. It's a strange diagnosis and one that doesn't have a ton of research (or research dollars) behind it. I say find something in your life that brings you joy - and try to focus on those things... and not let this steal that joy. It is hard, and you being newly diagnosed, I believe you will go through some ups and downs. But you can reach deep and find the strength to get through... and if it comes to it, Denise, there are LOVELY options out there for coverage... believe me. Some women say their hair covering is far nicer than their "normal" hair ever was! It isn't "ideal" or situation - but there are great options out there.
I think you will be fine... just a journey. Wishing you well, for sure. Blessings - Lori
PS: May I ask how much you've lost up to now? I am back a bit more than 2 inches above my ears and at temples... and close to an inch right at front hairline.
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Permalink Reply by sallylwess on
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I am so sorry to read of this devastating diagnosis. I am always amazed at how similar our journeys with this disease are. This group has provided me with so much information and support. I think it is always good to see a specialist, but also try to keep your GP in the loop. I am including a recent blog post I wrote about my journey with FFA and LPP. I hope it helps you to feel less alone. I have chosen to take the drugs at a rather late point in the game. I was in denial about how hair I would actually lose. I wish I'd tried medications sooner. Part of the reason I did not try the medications is because they were not offered to me because I was seeing doctors not familiar with the problem.
http://sallysbloggingspot.blogspot.com/2016/01/hair-journey-of-loss...
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Permalink Reply by ammie on
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Welcome. Sorry to hear about your diagnosis. This is a great group with a lot of good information and support.
I just turned 40 and have been dealing with this disease for about three years. My hair is curly and I used it wear it pulled off my face in so many different styles. I can't do that anymore and it makes it sad but I've adapted. I can still wear it up if I bring hairs around my face. I'm taking Plaquenil and Finasteride. I haven't taken either one for very long so I'm not sure yet if they are working.
There are different treatment options. Working with a specialist will help you find one that is right for you.
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Permalink Reply by Donelle on
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Hi Denise
I am 62 and have been dealing with FFA for about 8 years. I lost around 2 1/2 inches on the sides and about an inch at the crown, as well as my eyebrows and most of my body hair. I was told my hair would never grow back and that I must learn to live with it. However, I was referred to Dr Aisha Ali, a specialist dermatologist practicing at Charing Cross Hospital in London. I went the rounds like most people on this forum until I was referred to her. I feel so very fortunate to have her treating me, and when I saw her last Tuesday she cautiously told me it appears I am now in REMISSION!!! I have taken Cellcept then Hydroxycloroquine and have used Minoxidil 5% for the last six years and some of my hair has actually grown back. These new hairs at first were wispy and scarce but now they are much like normal hair, but a bit curlier. I still haven't had any eyebrow growth, and don't really expect any. But I'll take what I can get! As you can imagine i am overjoyed and much relieved. You didn't say where you are located but I live in southwest Wiltshire and travel to London especially to see Dr Ali. The clinic is horribly busy and I only get to spend minutes with her but she is one of the few specialists in the UK and is up to date on treatment options.
Best wishes to you.
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