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: 601
Latest Activity: Jul 8, 2023

Discussion Forum

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

Dermatologists who specialize in alopecia?

Started by NorthCarolinaMama. Last reply by tcasal Nov 2, 2022. 1 Reply

Hope everyone is having a great weekend!I'm a freelance writer working on a story about alopecia. I need to find a dermatologist at major hospital or teaching institution to interview -- any suggestions?I've already reached to physicians at Duke,…Continue

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Comment by April on October 31, 2013 at 7:43am
Hi everyone! I was just reading this article that claims fish oil/dha has the same effect on the body as glitazone drugs like Actos. I know actos is sometimes prescribed for FFA. Does anyone take fish oil/DHA? Any success? Thanks
Comment by ElleMN, USA on October 28, 2013 at 10:28am

http://experiencelife.com/article/questionable-food-combos/

I'm a pretty healthy eater but this article was eye opening. It talks about food combining and how some combinations can lead to inflammation. This just touches the surface but I found it helpful. 

Comment by Pam on October 28, 2013 at 4:22am

I have been wondering about injections too. I am going to see Dr Harries next week (shame its not the same time as you Celia - we could have done Trafford therapy together!  My husband is not so keen to accompany me to that!!). Seriously, I am very interested in hearing how you get on, and any other tips for me about different treatments that I should discuss with him that I have not already tried.

Comment by Debs on October 28, 2013 at 3:26am

I have just bought the new book by Dr Joel Furhman 'Eat to Live Cookbook', he has just released a revised copy this month.  Very easy to follow recipes that are suitable for those of use trying to use diet to help our FFA.  I am not a good cook and even I can get my head round this. XX

Comment by Sam on October 27, 2013 at 10:29pm
I had my third round of injections last week. No dents for me but they are being done in my hair, 1 centimeter back when done correctly by dr. Shapiro. Because he doesn't take insurance the plan was to go to him every third round but when I went to my other derm for the second, she was not there and a resident physician did them too far back. I was very angry bc they had dr. Shapiros explicit instructions and didn't follow. He did 30 injections 1 cm and she did about 7, even 2 inches back at one point. I truly believe dents are due to shots being done on the hairline not further back. Not sure if working. I am having a lot of thinning out on the sides :( but maybe if they didn't screw up my second round that wouldn't be as bad? Who knows.

Anyone think the topical may thin hair more? I kinda do and have been reluctant to use too much for that reason.

April, I'm with you on the meds but was almost ready to try doxy short term but I read a lot from google search that people feel doxy causes hair loss. Anybody find that on here? I took this 10 days before and thought I had more shedding.
Comment by Celia on October 27, 2013 at 2:01pm

Hello all.  I am seeing Dr Harries  on Thursday morning.  I hope to be cured this time by Friday.  If there are any new questions anyone may have - I will happily ask him.  Looking forward to a little retail therapy afterwards in The Trafford Centre.  On the subject of injections, I didn't have them the last time as Dr Harries felt my skin was still recovering from the previous ones.  I am not planning to have them this trip as I still have a long ridge at my hairline plus a few dents.  Fortunately my fringe still covers them. x

Comment by April on October 27, 2013 at 1:39pm

Debs, I guess I will have to decide soon whether to try them or not.  Keep me posted if you decide to try them and if they are working.  Thanks!!

Comment by Debs on October 26, 2013 at 3:47am

April this is such a hard decision for us all... As you say the steriod injections work for some ladies and not for others... I am having very mixed emotions about whether to try these injections or not.  I am very worried about the dents they can leave... I am using oral meds (plaquenil) and I want to give the doxycycline a go next time I see my derm.  I guess if you are not using oral meds then the shots might be worth continuing with, you could also back them up by using the steriod lotion dermovate and some of the ladies are using regaine (also marketed as rogaine) to see if that helps.  You are certainly well informed and doing everything you can with your diet and supplements to help heal yourself.  XXX

Comment by April on October 25, 2013 at 11:51am

Hey Everyone, I think I need some advice.  I am worried about these injections.  They seem to have helped others on here, but others not so much.  I had one round of the injections about 2 1/2 months ago.  These shots caused a dent in my forehead which I believe is starting to fill in a bit thankfully. I also believe they caused increased shedding of hair.  I refused another round of shots last time I saw my derm because of this.  He said these shots do not cause hair loss and that I should continue with the shots because it is the only thing that will really help.  I am not going to do oral meds, at least for the time being.  Currently I am receiving UV excimer laser therapy which has reduced the red, inflamed appearance of my scalp greatly.  I believe it may be slowing down but not stopping my hair loss.  I am also following a Paleo diet  and using a shampoo with tea tree and peppermint oil as well taking turmeric. I may try the shampoo that PJ had success with.  I'm not sure what else I can try medically other than the shots, since I am not doing oral meds.  I have an appt. for a second opinion with another doctor and I am seeing a different provider at my derms office on Tuesday.  Not sure if I should continue with the shots or not??

Comment by PJ - MN, USA on October 25, 2013 at 8:06am

I forgot to mention with the shampoos, you need to leave them on your head for 3-5 minutes. Also, do not rub the conditioner into your scalp. Just in case it has something to do with my hair, I have been taking a multi vitamin, fish oil, vitamin D, blood pressure meds and potassium. I have been taking these for a long time and none of which were prescribed because of my hairloss.

 

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