Frontal Fibrosing Alopecia

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Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

Location: Dubai UAE
Members: 602
Latest Activity: Jul 14

Discussion Forum

CARF Conference 2018 Notes

Started by CurlyK. Last reply by kevinsstelly Jul 14. 32 Replies

CARF 2018 Conference Notes:First of all, I am so glad I went to the CARF Conference! It was worth every dime I spent – a true investment in myself, but hopefully I can bless and encourage others from what I learned.The CARF staff and volunteers are…Continue

Botox and FFA

Started by 2Dachshunds. Last reply by Shawnaynay Jul 8, 2023. 18 Replies

Hi Everyone: I remember there is a women on here who connected Botox to FFA. I was given the article, Frontal Alopecia after Repeated BotulinumToxin Type A Injections for Forehead Wrinkles:An Underestimated Entity?Antonino Di Pietro a Bianca Maria…Continue

Tags: Botox, FFA

Trying a new approach with CBD oil...

Started by Robin. Last reply by anettemandell Apr 20, 2023. 31 Replies

Hello All, I am venturing into new territory. It just dawned on me that a good experiment would be to try a medical grade CBD oil tincture on my hairline and see if it affects the redness. CBD is the nonpsychoactive part of marijuana that is being…Continue

Man with FFA. New member.

Started by Thomas. Last reply by Thomas Nov 23, 2022. 27 Replies

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…Continue

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Comment by Cheryl on November 25, 2018 at 9:54pm

I thought I was in remission and decided to go off finasteride 6 months ago, and my symptoms are coming back :(  I have noticed some hair loss and have had itching. I started back on tonight after reading the article about how helpful it has shown to be. It was helping me and I thought I did not need It anymore. I was wrong!

Comment by Elizabeth W on November 25, 2018 at 9:30pm

Check with your insurance company.  If you are on Medicare you probably have your prescription drug plan covered by a part C medicare PPO or HMO, or part D if you are on traditional medicare.  Or again check with your pharmacist to see if finasteride is covered.  

Comment by Toby on November 25, 2018 at 6:40pm

I do not know if finasteride is covered by Medicare. Your doctor or the pharmacist may be able to tell you. 

To young women who may want a baby, do NOT take finasteride as it will harm the baby.

thanks.

Comment by Mary on November 25, 2018 at 6:31pm

Oops...I think the drug I was on before might have been doxycycline--anyway it was an antibiotic that is also used to treat malaria.

Comment by Mary on November 25, 2018 at 6:27pm

Does anyone know if finasteride is covered by Medicare in the US?  I am afraid my FFA is becoming active again because of a return of the itching.  I am also afraid to actually go see the dermatologist because I am also afraid of adding another drug to the cocktail of cardiology drugs I am on for life.  When the FFA flared up before, I was on hydroxychloroquine for over a year.

Comment by Toby on November 25, 2018 at 6:08pm

Hello ladies, I am on 5 mg of finasteride per day. Plus clobetosol and my dermatologist said to go gluten free and milk free. It takes a few months for the finasteride to get working. I have experienced no side effects from finasteride and my general physician said it is fine if I am on finasteride the rest of my life.  

Five months ago my FFA was extremely active and driving me crazy.    Fortunately, for the past 6 weeks, I barely feel the disease.   I should say that I was on prednisone for 20 days about 4 months ago. However I credit the prednisone for reducing the active intensity of the disease and the article on finasteride appears to be working for me.  Last trip to dermatologist, I had baby hairs in the impacted area. I was not even hoping for that, I just wanted to halt the disease. 

I am 62 in the USA and my insurance thru my employer does cover this.  Hope this helps someone. I know how you feel. Best of luck and thanks for sharing the article!

Comment by Miss Mymble on November 25, 2018 at 5:41pm

Illust8r, thanks for your post. Interesting! And it makes me wonder if it would be worth a shot to go down that route. Didn’t the paper say it only took 3 months before they noticed some positive progress? If so, one could try it out for a short period - just to see if one would be a candidate for it. Hmm dunno.

Halfbakedwho, hear hear for waking up to a renewed hairline!! :) Cool you’re trying it out. Very interested to hear your experiences with it. I just checked the cost of Finasteride in Denmark. And it seems crazy expensive. Is it like that in France as well and do you get some of it covered by your national health insurance? I haven’t spoken with my doctor in Denmark about this yet (the dermatologists I’ve seen are both in Germany). But as far as I can read it seems like our healthcare only cover some of the expenses of Finasteride if you’re  male - as it’s not supposed to be given to female. 

Comment by Plf on November 25, 2018 at 5:34pm

Oh halfbakedwho, your on to it!  I am trying to find my script. But think I may have thrown it out when I decided not to go down the medication route..which means another visit to the dermatologist..or I suppose I could ring her up and get her to send one out..I'm procrastinating....hope to hear good news halfbakedwho, fingers crossed, 

Comment by Halfbakedwho on November 25, 2018 at 3:15pm

OK, ok... Thank you SO much for the paper, Illustr8r - I was prescribed 5mg/day of Finasteride that I have been afraid to take, and this paper made me say "ok, hell, why not" - but in the paper, she only took 2.5mg so I cut it in half. I figure it's better than not trying it at all. So I started today November 25th, and I will let you know if I wake up with a renewed hairline. Not on the LPP FB forum, but maybe I will check that out (only on the FFA FB forum). But I am trying to slow down my internet and social media use (ha!). So you didn't see this post. 

Comment by Plf on November 24, 2018 at 11:41pm

Thanks for the update illustr8r, that research paper via probably the first one that I have read that really supports Finasteride/dustaride, I would love to know if anyone on this forum has had success and no side effects from these drugs.  I have a script for dustaride but didn't start taking medication as was worried re liver and kidney implications..as usual now I'm in a quandary what to do!  Might start up another post and see if any other members are on this drug with success, thanks again

 

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