Comment

Comment by AC from CA, USA on March 24, 2013 at 2:33am

Link to study info: http://www.permanente.net/homepage/kaiser/pages/c12551-48357.html

Comment by AC from CA, USA on March 24, 2013 at 2:10am

Hello Ladies,

Still trying to come to terms with life lived with FFA. In particular, trying to decide if I want to embark on the treatment path...just can't readily stomach the idea that taking high powered systemic drugs is a good thing. I am planning to see an alopecia specialist soon and hope that will clarify things for me.

Speaking of this specialist I will be seeing, those in the US, west coast, may be interested in participating in the following study by this US physician with national prominence as an expert in studying/treating alopecia. She's published various medical studies and a book on managing this disease. You can look her credentials up on the internet.

Cicatricial Alopecia Research Study

Dr. Paradi Mirmirani is now enrolling patients with cicatricial (scarring) alopecia in a research protocol that is being conducted in collaboration with the Department of Dermatology at Case Western Reserve University. Patients over the age of 18 with active cicatricial alopecia(any variant, treated or untreated) are eligible for enrollment. Participation includes filling out a hair loss questionnaire, scalp photographs, and two scalp biopsies. Scalp biopsies will be evaluated for changes in enzymes of the sebaceous glands (peroxisomes) which may lead to lipid accumulation and then destruction of the hair follicle. There is no compensation for participation in the study.

For patients requesting further information or patients interested in participating in the study please contact Paradi Mirmirani at: Phone: (707) 651-2552 e-mail: Paradi.Mirmirani@kp.org

Comment by Simone NJ USA on March 23, 2013 at 3:01pm

Hi Sandy:

Thank you for the info.. I just signed up to participate...

Comment by PamW San Diego, CA, USA on March 23, 2013 at 2:32pm

Sandy, thanks! Just signed up to participate.

Comment by Debs on March 23, 2013 at 2:26pm

Sandy, I just checked this link out - fantastic some research is being done - I completed a survey here in the UK just a few weeks ago for Dr Harries in Salford.

I have emailled this survey in the States and told them about our group, I also said we have ladies in UK, Germany, Iceland and Portugal so is it possible for any of us to join in this study, with any luck we can get an opportunity for more of us to contribute data.

Thanks Sandy.

Comment by Caro UK on March 23, 2013 at 11:47am

Debs thanks for the feedback on Planquenil. I saw my GP yesterday and asked him to change my prescription to Planquenil. He said it shouldn't make any difference, but agreed to my request. Started taking it straightaway, and so far I've had none of the burning stomach pain that I had previously. I'm taking 200mgs twice a day.
Went shopping yesterday and because it was so cold I was wearing my fur hat. (not real fur) Felt quite normal! The bad weather does have some benefits!

Comment by Debs on March 22, 2013 at 10:26am

Judy thanks for the info on your probiotics, I will see what I can find in my local health food stores. XXX

Comment by Susanne on March 22, 2013 at 8:21am

Jules, I'm still gluten-free. It's helped my skin on my forehead a lot,but not so sure about the hair-loss. Hard to know, as I am also taking plaquenil and eating better all the way around. Since some daily hair loss is normal, it's always hard to know. Still have doll's hair for sure - nice description - but it's hanging on for now and I can still get away with a comb-over.

Comment by Jules UK on March 22, 2013 at 5:19am

Celia, we're told it takes 6months for these meds to take effect, but we don't have that luxury of time. I practically rattle with all the tablets, homeopathic and food supplements, I'm taking. A friend also gave me some argan oil to rub into the scalp for its anti inflammatory properties. It's a bit smelly but feels nice.
How is anyone getting on with Protopic? I'm sure it made my FFA speed up. I told Dr Harries and he gave me Elidel, which contains the same active ingredient. I fear there is a very limited toolbox at our disposal and we have to work through it regardless of our individual reactions.
Celia, I hope your holiday was relaxing! Back to an English spring!
Jules x

Comment by Jules UK on March 22, 2013 at 4:45am

Hi all, and thanks Alice for showing that there's always something to giggle at! :-)
Judy, it's heartening to have some positive news here. My front hairline is getting worse at the mo. "doll's head" hair describes it perfectly. It gets wiry then falls out. Doxycycline seems to have no effect. Nor the homeopathic treatments I'm trying.
Is anyone else still on a gluten free diet? I lapsed a couple of weeks ago and perhaps hairloss has worsened since then. Back on it after the weekend.

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