Frontal Fibrosing Alopecia

Information

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

Comment Wall

Comment

You need to be a member of Frontal Fibrosing Alopecia to add comments!

Comment by Chrisy, MA USA on July 7, 2013 at 4:57pm
Hi Celia,
Do you know if these lines and dimples go away eventually if you stop the injections?? I'm 37 and I believe the trigger was a shocking experience I had few years ago with pregnancy.
Comment by Simone NJ USA on July 7, 2013 at 1:05pm
Hi Debs:

Thanks for the info on the essential oils. Could you tell me how do you determine the mixture or measurements with the oils? Would it be 1/2 tumeric/lavender essential oil with 1/2 the carrier oil? Do you massage it into hair by itself or mix with shampoo/conditioner? Also, how long would you leave it on for and how often do you use it? Thanks
Comment by Debs on July 7, 2013 at 12:05pm
MARULA OIL. A fiend of mine that is very knowledgeable about beauty treatments has just told me about marula oil, it is being recommended as a facil oil in the USA by dermatologists and plastic surgeons as a proven anti-ageing treatment. I have bought some online at Amazon in the UK, it is available on the Sephora website in the USA. I intend to use it on my scalp as well as my face. It has anti inflammatory and anti bacterial effects and heals skin with many types of problems. Marula oil can be used on its own but I am going to use it as a carrier oil for the essential oils I am using for inflammation (turmeric and lavender essential oil) It is not cheap - £49.99 or about $78 but it i will use it on my face as well as my scalp. xxxx
Comment by Celia on July 7, 2013 at 2:45am

Hi Chrisy - yes the steroid injections can make lines in your forehead. I have had them 3 times now. I have a vertical'line' down the centre of my forehead and some dimpling where the injections went in. Dr Harries said he wasn't going to do the shots agin the last time I saw him a couple of weeks ago, because of the effect. I am not so sure they help - it is the same with the medication in a way - we cannot be sure that any change in the condition is due to meds or injections, or if whatever happens would have happened anyway. I hope that makes sense. I am curious to know what age you are, Chrisy, as the majority of fellow sufferers seem to be over 50. Can you think of a possible 'trigger' for this happening to you ?
April, I hope your laser treatment works ! X

Comment by Chrisy, MA USA on July 7, 2013 at 1:21am
Hi April and welcome in the group. I'm very interested on the laser treatments as well. I read about xtrac but I didn't see that it treats hair loss. Who recommended it to you? I'm wishing you good luck and please let us know how it goes.
Also, I wanted to ask the group those who use steroids injections to see if they have any apparent side effects. I started seeing lines going down my forehead that I never seen before and also a mark on my eyebrow. I'm sure this is related to the steroids. I remember my doctor saying that this might be one of the side effects but it is rare and she has never seen it in her patients. I only had injections three times and I started seeing this. I'm very upset about it. I don't think I will continue with the injections. I don't even know that they help. If I just use the topical cream could it also has the same side effect??
Ouffff!! I'm just very frustrated with the whole situation. I wouldn't mind start with rogaine since so many of you use it and are seeing results but I'm afraid I'm gonna have stop it in the future and I will loose everything I gain. You see I'm still young and the possibility of another baby is still in my mind. I might just stop everything and go for a nice wig. That will give me a piece of mind I think. I seriously thinking about that option....
Comment by Debs on July 6, 2013 at 5:20am

April I recall that we did have some posts on here several months ago about laser treatment. I have also seen posts about using excimer lasers on hair loss on other alopecia forums. I think it is a very good idea. In the UK these lasers are not offered on our national health service for hair loss and there are not that many around, apart from those used to treat short-sightedness. Do let us know how you get on. Good luck xxxx

Comment by April on July 5, 2013 at 9:01pm
Hello everyone: ) I'm new here, you may have seen my recent post. Anyhow, just wanted to update everyone: I did see my dermatologist last week and since I am still nursing and want to have another child at some point, the oral meds are off the table for me. I may try injections and rogaine when I am done nursing. What I am going to try is xtrac laser therapy since it is apparently safe with few adverse effects. The down side is I have to travel to a clinic 45 minutes away twice a week to have this done. So it is going to be time consuming and costly with copays, gas and a sitter, etc. So, I am really praying this works. I haven't seen too much about it on here. I did find one study online that showed some benefit but mixed results overall. Anyhow, I will let everyone know what the result of this treatment is. I start on Tuesday. Also, I am planning on starting a paleo type diet as well. Thanks again everyone, I've learned so much from reading all of your posts!
Comment by Debs on July 5, 2013 at 7:24am

Hi Ladies, I saw Joe Cross on TV today talking about his 'reboot' healthy eating system. He also had an autoimmune condition and used juicing along with improving his diet by reducing processed foods to cure himself. I know some of your have gone gluten free and used the paleo eating plans in the past. I am not really having much joy with my drug treatment and am becoming increasingly uncomfortable about trying other drugs in the future so I have just ordered myself a juicer from the internet, I have a week off work next week so I shall start to reboot myself and see how I feel. I don't expect a miracle but it will be good for my overall health and I will use ginger, turmeric and fruits/veg from the anti-inflammatory diet plans to try and sort myself out. Have a grand weekend. XXXXXX

Comment by Jules UK on July 3, 2013 at 5:24pm
At my last appt with Dr Harries, he mentioned Finestride but the side effects outweighed any potential slowing of hairloss. Notably loss of libido, and at my age.....
I have tried homeopathic treatments but found that they really had nothing to offer. Although I do agree with Debs that investigating natural therapies like turmeric could be useful.
X
Comment by Debs on July 3, 2013 at 3:22pm
Thanks Liz for clarifying the side effects. I am not going to take it if I am offered. I don't want to pursue drug treatments for much longer, not unless research can prove a drug is effective and has minimal side effects. I am healthy apart from my FFA and I don't want to conpromise my health using drugs.
 

Members (602)

 
 
 

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

© 2024   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service