Comment

Comment by Paula uk on April 3, 2013 at 5:33pm

Hi ladies,
In need of your help and advice.Having been diagnosed with LLP and hairloss consistent with FFA in mid March.
Please forgive my ignorance...

Is LLP and FFA the same thing?
Does LLP cause FFA?

So I'm just realising for me my hairloss is :- along my front hairline and above my ears and also at the back of my head and on the crown!

I think after my diagnosis I concentrated on FFA and assumed my hairloss would be more frontal hairline loss.I think I was in shock and denial.
I'm on Prednisolone ,Elocon scalp lotion and Etrivex daily shampoo.
If anything I feel my hairloss has quickened since I am on medication - is this a common feeling or is it that I'm totally tuned in now so I notice the slightest change?
In your experiences is it almost certain that I will need wig / hairpiece with these conditions? What kind of timeframe?
I have more burning ,itching and inflammation now than I did previously.
My hair is now very dry as I have wash it everyday with Etrivex ,I shampoo and condition it one day and then just conditioner the next.
I also was diagnosed with Roscrea since January so is that also part of this disease, although not prescribed anything...

Fed up.x

Comment by CJ- Christine from Ottawa Canada on April 3, 2013 at 3:09pm

Liz,
I think the inflammation approach is significant. I have psoriasis on my feet ( inflammatory condition) Lichen sclerosis and Atrophy ( inflammatory condition), digestive issues like IBS ( maybe inflammatory .. who knows) and some version of dermatitis (- also inflammatory). I have done two months of gluten free to see if it might help..no such luck. but I am convinced that there must be a connection to all these inflammatory conditions roaming around in my body. that said, Plaquenil didn't work for me - just gave me chronic stomach upset.

Comment by AC from CA, USA on April 3, 2013 at 1:27pm

Ellen,

I am to see Dr. Mirmirani for treatment consultation sometime soon...am waiting for an opening in her schedule. My biopsy showed both LPP and FFA. My disease progression has included intense itching, flaking, dryness snd the doll hair syndrome. My eyebrows, under attack, started sticking straight out in weird directions or doing weird curly things.

I'm interested in the research that toxic lipids are causing the inflammation. Can't wait to see Dr. Mirmirani!

Comment by Liz on April 3, 2013 at 12:39pm

I have dry hair. Very fine but lots of it (before this) and it's always been dry. Now the hair that I have left is drier than ever and is feels very different to how it was before. It's thinner, whispy and sticks up and out like a dolls hair.
Does anyone has other areas of thier body that are inflammed in some way? I have quite red skin on my feet which I've had for years. When I take the Doxycyline the redness goes. I also have Gall stones which cause inflamation.
Also why is it that it's only the front of the hair and sides that we lose. What is different about the hair that grows there?
And lastly :o) When are we going to arrnge a meeting?
x

Comment by ElleMN, USA on April 3, 2013 at 10:47am

Yes, Alice, I do remember that happening. I remember sitting at my desk at work and noticing a lot of flaking on my shoulders and thinking--what is gong on? Why so much dandruff all of a sudden? At the time I had a newborn at home and was severely sleep deprived and just attributed it to that.

Caro, I wanted to mention that at my last derm appt I was diagnosed with Rosacea...what next? I do have a history of skin disorders, acne, eczema, psoriasis...but Rosacea is new.

Comment by Alice on April 3, 2013 at 10:15am

Thanks, Ellen, for posting the link to the article on LPP & toxic lipids. Although much of it was too technical for me, I did notice that it mentioned 'decreased sebaceous activity'. Now that I think about it, I did notice that my hair being very dry quite some time before I noticed the hair loss. Does anyone else recall this happening?

Comment by PamW San Diego, CA, USA on April 2, 2013 at 3:33pm

Hi, Ellen. The doctor that did this research is presently looking for volunteers for research. The link to volunteer is posted somewhere on this forum (it is not the Wake Forest study). It is through Kaiser, I believe. the drugsmthatbare mentioned in the research, Rosiglitazone maleate and pioglitazone, have black box warnings. One of them was actually banned in Europe and by the FDA. The other one is Actos, and does come with a warning, which is why docs are so reluctant to prescribe it. What I think is interesting, is that there was talk of developing a topical cream from the active ingredient in Actos, but I don't know whatever came of that. CJ, could you ask the dermatologists in your organization?

Comment by ElleMN, USA on April 2, 2013 at 3:03pm

I came across this article while researching toxic lipids. I thought it was interesting and some of you might want to read it. While it's not specific to FFA, it has some hopeful info on LPP.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2937154/

Comment by CJ- Christine from Ottawa Canada on April 1, 2013 at 11:05am

HI all,
Thanks Pam for the great explanation- it makes me want to find out more about Actos.
As for approaching people....I expect that most people would feel uncomfortable being approached.. because its a confirmation of their worst fears.. that others notice their hair loss. By saying something we confirm that whatever they are doing to mask or hide the situation, its not working. I have said to the folks I have talked to something like what Heidi said, but started out with... "I have a hair condition, called FFA, recently diagnosed and I find myself hyer-aware of everyone's hair line, which is why I noticed yours.. which most people wouldn't notice at all, and I could be wrong, but...have you got a good doctor you are seeing for your hair condition..?

anyhow.. this went over well, both times I tried...

Comment by Kath UK on March 31, 2013 at 3:32pm

Thanks, Pam, for that excellent explanation. It made things a lot clearer for me and I'm grateful to you.
My sympathy to Heidi who made an approach to someone and was snubbed. I think you were brave to talk to that other lady, Heidi, and I'm sorry she didn't respond well to you. I often see someone in my town who I am certain has FFA but have never felt confident enough to speak to her so I admire you for at least trying to reach out.
Happy Easter.

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