Comment

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.

Comment by PamW San Diego, CA, USA on July 23, 2012 at 3:43pm

I am a 55 year old female just diagnosed with Frontal Fibrosing Alopecia. I am looking for anyone who can tell me how quickly their hair loss progressed and if they tried anti malarial drugs and or actos. My derm was able to diagnose me right away, so I feel lucky that I didn't waste years getting a diagnosis. She says stopping the inflammation is keynto stopping the hair loss. Has anyone had good experience with slowing things down?

Comment by Carol Sue Cain on July 8, 2012 at 9:12pm

Hey y'all!
When I was going to my dermatologist who did her fellowship on scarring alopecia, she said that (at least her) research implicated the oil produced by the hair follicles. She said that for some reason, the oil is not normal (something about messed up "lipid pathways"). The inflammation is the result of our bodies rejecting/fighting the "foreign" oil. In this sense, our alopecia isn't technically "auto-immune"...but it's all related. Anyway, ACTOS, the diabetic drug, does something to the lipid pathways and it seemed to help my case. BUT, that drug also is implicated in a lot of bad side effects, so I stopped taking it after a year. She is waiting for the active ingredient in ACTOS to be produced by pharma in a topical form. Problem is, that doesn't seem to be happening anytime soon. In the meantime, it seems all we can do is treat the inflammation and try to break that cycle. Bottom line, the medical establishment doesn't really know much. Scarring Alopecia is supposed to be RARE....yet my doctor said she is seeing A LOT of it in that past few years. hmmmmmm

Comment by Carol Sue Cain on July 6, 2012 at 11:51pm

Hello all!
I was diagnosed with scarring alopeia 2 years ago. It started out with me realizing (by looking at a wedding picture) that my eyebrows had disappeared. Also, my head was itchy and at night got cold. I went through a battery of tests disproving thyroid, finding gluten sensitivity (which I now avoid) and finally a derm specialist who happened to have done her fellowship in scarring alopecia.
She biopsied my scalp and found moderate to severe inflammation. I was on some anti-malaria med for a while (anti-inflamatory) but it did nothing. I was on ACTOS for a year and and cortizone shots. My eyebrows came back and my inflamation abated. I didn't like being on it due to potential side affects, and stopped last year. Unfortunately the inflamation has returned (mild) and I have started loosing my eyebrows again.
I'm thinking of getting eyebrow tattoos.
That's it in a nutshell. My hair is thinning on the front, but it's not so bad unless the wind blows. (My hair is pretty baby fine anyway). I went blond to soften the color difference between my scalp and hair. Everyone assumes it's to hide grey.
I've been pretty open about my condition with friends and co-workers...warning them that I'll probably become the crazy hat/scarf lady eventually! :)

Comment by Heidi Short UK on July 5, 2012 at 6:26pm

I'm not very computer literate,andI'm not sure if I'm writing in the right place to reply to you all,hopefully you get this!!! I realised there was a problem in January as my hair was receding like a man's would.I went to the doctor and he did loads of blood tests, they all came back ok, except my hormone ones, which I already new as I have been going through the menopause since I was 43 and I am now 48! Over the next few months I was having some other issues with allergies and I was waiting to see a consultant so I thought all this, and the thinning of my eye brows would be connected, and the consultant was going to give me a magic pill and I would be right as rain!!! When I went he said he didn't know what was wrong and I should go and see a dermatologist. To cut along story short, I went private, and I have been given hydroxychloroquine 200mg and dermovate scalp application which I use morning and night.I have tried reflexology, a high alkaline diet, silica and hair and nail vitamines. Do I sound desperate!!!!! Iam so confused I don't know what to do for the best.Should I go down the medical route which uses medication that could damage my liver,kidneys, my eye sight,and even could make me loose my hair!but has had results which slows the process down but doesn't cure it or should I go down the complementary medicine way who haven't heard of frontal fibrosing alopicia so they could be working on an area that will make my body work better so will it make my hair fall out quicker!!! I am so confused I don't know which way to turn, any ideas anyone?

Comment by KarenGinny - Iowa, US on July 5, 2012 at 5:30pm

Hi, it's nice to finally meet others who have experienced the same thing (unfortunately) but we can all help and support each other. My hair problems started out with an extremely itchy scalp and flaking. I though it was dermatitis or psoriasis on my scalp - it was really bad so it went to my dermatologist and got a rx scalp treatment and shampoo- Clobetasol. The dryness isn't so bad now but I use Neutrogena t-gel shampoo to keep it under control.
We had a nice holiday - 4th of July, yesterday, had a cook-out at my husband's dad and step-mom's house, with her two daughters and my kids' cousins. Then stopped to see a fireworks show in our town. We were mostly inside during the day since it's been very hot here - hitting 100*F here in the midwest. The heat and humidity don't do my hair any favors! Our kids had fun lighting some fireworks in our driveway too. I also wanted to let you know that I'm on Facebook under Karen Beck (Karen Snyder Beck) - in Council Bluffs, IA - if any of you want to "friend" me. Otherwise I'll see you here. Hope you're all doing well.

• ‹ Previous
• 1
• …
• 504
• 505
• 506
• 507
• Next ›
• Page