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Hi All,
I got a Google alert for a study I thought many of you would be interested in. Here's the abstract:
This study aimed to assess the efficacy of systemic retinoids in treating frontal fibrosing alopecia (FFA). It was based on a retrospective analysis of 54 female patients with FFA treated with: oral isotretinoin at the daily dose of 20 mg (29/54) or acitretin at the daily dose of 20 mg (11/54) or with oral finasteride 5 mg/daily (14/54). The study was conducted between 2007 and 2017. The basic of the study is the measurement of distance between the frontal hairline and the glabellar crease prior to the commencement of treatment and after 6, 12, and 24 months. The treatment with systemic retinoids lasted between 12 and 16 months (the mean duration of treatment was 13.5 months). The primary treatment goal was defined as no further progression of disease after 12 months of treatment, while the secondary treatment goal was defined as no further progression of disease following the discontinuation of systemic retinoids. The primary treatment goal was achieved by 76% (23/29) of patients treated with isotretinoin, 73% (8/11) of patients treated with acitretin, and 43% (6/14) of patients treated with finasteride. The secondary treatment goal was achieved by 72% (21/29) of patients treated with isotretinoin, 73% (8/11) of patients treated with acitretin, and 43% (6/14) of patients treated with finasteride. Thus, the administration of systemic retinoids may be beneficial for the stabilization of frontal hairline in patients with FFA.
Rakowska, A., Gradzińska, A., Olszewska, M., & Rudnicka, L. (2017). Efficacy of Isotretinoin and Acitretin in Treatment of Frontal Fibrosing Alopecia: Retrospective Analysis of 54 Cases. Journal of drugs in dermatology: JDD, 16(10), 988.
Replies to This Discussion
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Permalink Reply by sallylwess on
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Thank you for sharing this. I find it most hopeful for those whom are able to use these drugs.
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Permalink Reply by pauliegirl on
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Wow thank you for sharing! This is about as positive of a result I have seen! I am excited!!!
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Yes, thank you for posting! I will share this with my dermatologist - though I don't think it will work for me as I don't seem to tolerate the drugs very well :-(
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Wow! Good news indeed. I believe isotretinoin is Accutane--- unfortunately for many it is a difficult drug to tolerate. Thanks for the info, will definitely bring it up with my derm next month. I also was glad to see a definitive way of measuring for hair loss-- using landmarks on the skull. My doc always just asks me what I think or takes a photo-- never in the exact same way so it's hard to compare.
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I might be getting my hopes up too much here, but I'm wondering if this could possibly lead to successful hair transplants for those who have success with this? That would be super exciting!
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Jess, The exact same thing has crossed my mind! You know what? It’s ok to get our hopes up! Hope is good and heaven knows we can use an extra helping!;) I am going to my derm tomorrow with his and my plan to start accutane. Interestingly, my sister had found another research study about a month ago in which accutane was used for a three month period in FFA patients who have the facial papules. It completely cleared them up in 3 months. Whoa. My sister thought at that time that it all makes sense that accutane clearing out the follicles totally made sense and could also work to stop hair loss from FFA. She is pretty brilliant! Will keep you posted! Are you going to pursue the accutane?
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Hi Pauliegirl,
I'm not sure if I'll pursue accutane. I'm leaning toward it, but I've been on Dutasteride since May and I think (?) it's working, but can't be sure. This stuff just progresses so slowly that it seems like I can't tell if it's getting worse until a good bit of loss has occurred. I do have the small bumps though. Not a horrible case, but they bother me. Knowing that accutane treats those too is pushing me toward trying it.
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Jess, I started the accutane 20 last Friday. No dryness issues but I already take good care of my body skin with EO’s and drink plenty of water. Anyways, it seems that things are pretty quiet at the top of my forehead which is where I’ve had inflammation and further loss since about April. I am cautiously optimistic! I have questions for the researchers...I might try to write them! I wonder how long before patients saw results. Also, surely it has been longer than 2 yrs for some as the study started in 07...so can they say anything about the longevity of effects outside of the 2 years?
Gosh and with the papules...it seems like you would benefit from at least giving the accutane a try! Please keep me posted and again, thank you for sharing the article! #grateful
PS I am on finasteride 2.5 since April. I had further loss despite that (and Plaquenil, topical tacro and clobetasol! —as you can see I am not worried about meds! I am a nurse and feel confident they are safe...).
PSS Looks like our docs should invest in a trichiscope so we can be definitively measured and monitored! -
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I'm checking out some of the side effects, and they do make me a little wary. I realize most of them are pretty rare, but the excessive bone growth, particularly of the face freaks me out.
I also read that dryness of the skin, lips, and eyes is very common. Dryness of the lips is so common that if you don't experience it, "they" consider that to be a sign of non-compliance with treatment. I feel like FFA has really aged my skin, along with rosacea. I'd hate for this to take more of a toll on my skin. Ugh. Gotta weigh the potential benefits vs the potential cons. I'm on the fence.
Glad to hear it's not causing you any issues so far!
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Permalink Reply by Desei on
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Hi Pauliegirl, I have also been on Finasteride 2.5 for the last six months (plus topical Minoxidil), having been diagnosed about 12 months ago. I actually stopped both for six weeks or so until recently, just in case it was affecting another unrelated acute condition I had going on (which I am assured by doctor that it wasn't, so I'm back on it). I didn't think I was losing any more or any less hair whilst I stopped the drugs, but I think I was in denial as on closer inspection I realise the hairline has crept back a little bit more :(. And my hair combs tend to fall out more frequently, due to less bulk.
Also, I just wanted to mention that another documented possible side effect with Accutane is depression and/or other neuropsychiatric conditions. Both my niece and nephew actually suffered from this type of side effect when taking Roaccutane as an acne treatment in their teens. As with any side effects though, it could be a predisposition to the respective side effect, but I thought it might be helpful to mention it anyway!
Here's a link to a Harvard article - it's the only article I looked at so further research is always advisable, as we all know!
https://www.health.harvard.edu/newsletter_article/Questions_andamp_...
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Hello
I saw this update too and plan to call my dermatologist Monday. I signed up for those updates and check the emails everyday and was so happy to finally see one pertaining to FFA. Let's hope this will help us suffering from this condition!
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Hi Jess, and greetings from Australia. Thank you for posting this information...I have only just in the last half hour discovered alopeciaworld.com and headed straight to the FFA forum (no prizes for guessing why!).
I also have a dermatologist appointment this month so will be sharing this research paper with her.
You mentioned you received an ‘alert’ re the research...is that from this website? As I am a ‘newbie’I haven’t had a chance to have a good ol’ look around but am just about to!
Thanks everyone...this is my first ever ‘support group’ so I’m looking forward to getting in amongst it with you all. -
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