Frontal Fibrosing Alopecia

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Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

Location: Dubai UAE
Members: 200
Latest Activity: 12 hours ago

Discussion Forum

Nutritional interventions for chronic inflammation

Started by Anne Louise. Last reply by Anne Louise on Monday. 8 Replies

Hi Everyone,I went to a conference for health professionals last week given by Michael Lara, MD.  He studied at Stanford, Harvard and UCLA and lives in California.  The focus of the all day conference was how nutrition can impact chronic…Continue

Are you contemplating eyebrow tattoos?

Started by Anne Louise. Last reply by Anne Louise Nov 14. 61 Replies

I am here to say I strongly recommend getting it done! It is worth every penny. I had mine done yesterday and I can't believe the difference in my life. For a year I had been carting around eyebrow pencils, always worrying about smudging throughout…Continue

Liver issues and alopecia

Started by Houle. Last reply by DebFromCA Nov 11. 6 Replies

I was wondering if anyone has had any liver issues?  The same time I was told I had Lichen planopilaris, I was also told that my liver enzymes were high. Reading up on liver issues it looks like the two could be connect?  Just wondering if anyone…Continue

The intralace system

Started by star. Last reply by sallylwess Nov 7. 1 Reply

Hi,just wondering if any of you lovely ladies out there have heard of http://www.lucindaellery-hairloss.co.uk?They have clinics in London Manchester Edinburgh and Bristol, and offer many…Continue

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Comment by Rebecca Germany yesterday
Hi Sas, I' ve talked to my specialist about the stemcell transplantion. He said this method is seen very critically by specialists worldwide. He said it was dangerous to transplant while the FFA is still active or suppressed by the cyclosporine. There' s a high probability that the hair will fall out again after the transplant. He recommemded very strongly not to do the transplant.
Sorry for being so negative, but I thought it would be interesting what other specialists think. All th best to you.
Comment by MJ on Thursday
Sas,
That is exciting news! Fingers and toes crossed that it is a success!
MJ
Comment by jess on Thursday
I am very excited that you are doing the transplant. I have decided that I also want to have it done, even if it means that I have to leave the country. Best of luck to you.
Comment by Sas Holland on Thursday

Hi everyone,  here's an update. I spoke to my dermatologist a couple of days ago on the phone. I have decided to go forward with the test stem cell transplant of 50 grafts.  He says it's the only transplant that is suitable for FFA patients, since the "normal or traditional" hair transplant technique is making to large holes in your skin and therefore ruins your skin. My FFA is in remission already, so the biopsy showed.

I need to take Cyclosporine exactly 1 month before the transplant and then a couple of months (I think 4) afterwards. I must make an appointment first with the Hair Science Institute in Maastricht with dr Gho, who will perform the transplant.

I will keep you updated on my progression with it as soon as I know more.

I need to patch up (is that how it's said?)  the tattoos on my eyebrows  first though, since I cannot do this when I take Cyclosporine, says my doctor, because  I have to avoid getting an infection while I am on Cyclo, since it suppresses my immune system.

Comment by C on November 15, 2014 at 3:17am

Ladies who have had eyebrow tattoos - don't forget to use a high SPF on them to help prevent fading !

Comment by MJ on November 14, 2014 at 6:49pm
I still have a little arm hair, but I have no idea how long ago most of it disappeared. I still have to shave my legs but the hair is definitely more sparse. Sparse in the bikini zone too. But, although my brows thinned, I did not lose them. I have read that eyebrows are 50/50 although I think most on this forum have lost them. It may be I caught my FFA early enough and got started with rogaine on my brows before they went....
Comment by Classical Anne in NC mountains on November 14, 2014 at 6:30pm

Linda, I just went back and read your interesting first post, in July 2013.  Sounds like you do have a very good medical team on your side.  Sorry for the stress and more recent depression you mentioned.  But glad that your latest post says that you're taking one day at a time and handling it.  There are quite a few of us here who would be interested in your derm's latest diagnosis.  It would seem that almost all of us have AA as well as FFA.  Which illustrates what a complicated and poorly understood condition this is.  The proof is here that eyebrow loss accompanies almost every diagnosis of FFA, and that arm and leg hair loss is common.  But I would hope we'd all be spared the emotional trauma of losing scattered patches of hair all over the scalp, as is common with AA.  I have started wearing a wig for certain occasions, because the quality and manageability of my remaining cranial hair is now low.  But I continue to be so grateful that a pretty scarf band still can cover the FFA loss on a daily basis, and gives my spirits a little boost.  Do please let us know if your derm provides further information regarding the eyebrow and limb hair loss.  Sharing thoughts with one another makes this website one of our chief forms of information and support, and I'm glad you're taking an active role in it!

Comment by Alice on November 14, 2014 at 2:45pm

Virginian, spironolactone was one of the first drugs my derm tried. I did grow hair, on the top of my head, while taking it, but could not continue because it made my BP too low. I've achieved about the same new hairgrowth using minoxidil and spearmint, either capsules or steeped tea. I actually have a few new hairs right at my front hairline, which I figure must be from dormant follicles that didn't scar over.

I agree that many derms may not be aware of the hairloss on arms and legs, in addition to brows and hairline, perhaps because patients aren't concerned so don't mention it.. I mentioned it to a derm who specializes in alopecia at a university, whom I saw for a second opinion, and she said it was "interesting". 

Comment by Linda from MT on November 14, 2014 at 12:12pm

I did get a second opinion in May 2012 at Oregon Heath & Science Clinic in Portland. That included two more biopsies and being prescribed Hyroxychloroquine. Both doctors communicated very well, also including my physician.  I trust my dermatologist completely, he does tons of research and his staff is top-rate, sending documentation so that my insurance would cover everything. Wednesday was the first that I had heard of the combination of AA & FFA as he had been to a Hair Loss conference.  I am far enough into this now, I am taking a deep breath and one day at a time.  This is a wonderful forum and I appreciate everyone's view, how we support each other and understand better than others.

Comment by Classical Anne in NC mountains on November 14, 2014 at 11:30am

Virginian, it sounds like your experience with FFA is following the typical progression.  It may feel worse before it starts to get better.  But it does get better.  Your MD's right, the hair will not grow back in the areas where the follicles are already scarred.  But there are many ways to slow the progression, and always hope that it will simply burn itself out and be done with.  I suggest you read backwards on this site for a while, getting familiar with our various approaches and successes.  And do a word search [uppermost right of every page] for spironolactone in particular, to see other ladies' experiences with that drug.  In any case, your blood pressure medication absolutely must take precedence. 

Welcome to this helpful site, and best wishes for your success in dealing with FFA.

Jen S, thank you so much for your kind words.

 

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