Comment

Comment by Heidi Short UK on July 25, 2012 at 3:01pm

With regards to your question of what meds I'm on I apply dermovate lotion twice a day and I take 1x Quinoric (hydroxychloroquine Sulphate)each morning and my reflexology lady suggested I take silica 4 times a day. I also try and do a high alkaline low acid diet ie. lots of veg and fruit. But unfortunately i don't think any of it is working. The reflexologist suggested I go and see a douser healer, but i don't think I will, I feel no matter what I do the hair will stop falling out when it wants too!

Comment by KarenGinny - Iowa, US on July 25, 2012 at 2:12pm

Oh I forgot to say that the hair at my neck line in the back, did eventually grow back in, but the hair in the front has not. Thus - FFA. also a lot of my major hair loss times appear to be at very stressful times of my life. And now my ANA is still elevated and I've been having trouble with pain & swelling in my hands and feet - my doctor thinks this is Rheumatoid Arthritis. I'm sure it's all related somehow. Anyone else have RA??

Comment by KarenGinny - Iowa, US on July 25, 2012 at 2:06pm

Hello, I haven't been on here for a while but thought I'd add my story. I was diagnosed with FFA this spring 2012 by my dermatologist. My hair and scalp problems began in the summer & fall of 2010. My scalp had been very itchy and irritated and I went to my regular doctor and she prescribed Derma-smoothe oil treatment, which you put on your scalp and leave on overnight. This was very difficult to use and didn't do very much good. I was using Neutrogena T-gel shampoo daily and it helped, but by later in the day my scalp was itchy again and driving me crazy. Went to my Dermatologist in 12/2010 and he gave me Clobex shampoo and clobetasol topical solution. These worked better but not completely. I also got shots of Cortisone along my front hairline. Around this time I noticed I had some hair loss at the back of my neck- a strip about an inch wide right along the back. I had bloodwork done which showed a positive ANA -anti-nuclear antibodies - which suggest an imbalance in my auto-immune system. I went to a Rheumatologist and they found nothing else wrong so they did nothing. I continued with the cortisone shots every 6 weeks - this was supposed to be for the inflamation. finally I quit going because my insurance would not cover it and was getting expensive. I was losing hair all around at this time but didn't really notice how bad until September of 2011 when the hair at my temples and front started falling out faster. I was just using the T-gel shampoo and the itchiness was not as bad now, just hair loss. In Feb & March 2012 I went back to the Dermatologist and showed him how bad it was now and he did a biopsy and blood work and finally diagnosed me with FFA. He said there were some Rx meds that might help but he didn't recommend them because of the side effects. So now my hair loss is about 2- 21/2 inches around the whole front hairline and ears, and seems to be staying that way. It's also thinned all around with a very thin patch on the back right side. I can cover it mostly with my remaining hair but am very self-conscious about it and wear a hat when I'm outside and it's windy. Sorry this is so long! I still use the t-gel shampoo daily and that helps with the scalp itch. I'm also taking more vitamins and trying to eat healthy in the hopes it will help. - Karen - also I am 47 yrs old.

Comment by PamW San Diego, CA, USA on July 24, 2012 at 9:36pm

Sandy, are you able to cover with a hair style? Do you take any meds? And, finally, hownlong does it take to burn out?

Comment by PamW San Diego, CA, USA on July 24, 2012 at 8:35pm

I was wondering if the members of this group could share how long they have been diagnosed and how quickly their hair loss progressed. Is hair loss rapid or gradual?

Comment by Heidi Short UK on July 24, 2012 at 3:29pm

Sorry i went to bed it was after midnight, I had spent nearly two hours trying to put a photo to my name, I told you all I'm computer iliterate!! I realised after I sent the message that Actos is the medication that Carol Sue was on, I think she felt it helped but came off it due to the side effects!

Comment by PamW San Diego, CA, USA on July 23, 2012 at 7:39pm

It is a drug used to treat type 2 diabetes. There has been some buzz about it being helpful in FFA. It is supposed to have an effect on the inprocessed lipids in our systems.

Comment by Heidi Short UK on July 23, 2012 at 7:15pm

I don't wear anything yet, accept for hats on windy days! I've been on medication since the end of May. what is Actos?

Comment by PamW San Diego, CA, USA on July 23, 2012 at 6:40pm

how long have you been treated? I am reading that Actos has been helpful for some. I am beginning to accept there is no cure or control for this disease. I am now into looking at hair alternatives. Do you wear anything? Are bonded human hair wiglets something I should consider?

Comment by Heidi Short UK on July 23, 2012 at 5:46pm

Hello Pam I'm using anti malarial drugs and steroid lotion twice a day. I would like to say it has relly slowed the hair loss down but if I'm honest I don't think it is. Sorry that isn't what you want to hear. My doctor did say it works better on some people than others so I hope you are one of them! I have also tried a change in diet, vitamins ,silica, reflexology, and I'm using Philip Kingsley itchy/flakey hair products.I am also desperate for imformation on something that i can feel positive about, that might actually work. I would love to find a professor or someone who is doing research into frontal fibrosing alopicia that we could all give our own infomation so they can collect data and perhaps get some results.

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