Comment

Comment by Rita - Canada on July 21, 2013 at 2:42pm

Hello all, Are we being mislead by being told these items work on 50% of us? Where are the people that any of these drugs have worked on? Give us some names, some proof. I appreciate that they are trying to help us & are doing their best. However if anyone has been cured of FFA, then wouldn't they be excited enough to let us know on this forum? So my question remains "Where are those 50% of us whom our derms tell us that one of these approaches has worked for?".

Comment by Pam on July 21, 2013 at 6:17am

Thank you SO much for all the information here! It is great to share this awful condition with other people who can really understand what one is going through. I know it is not life threatening, and you have to get it in perspective, but it still feels totally devstating for the sufferer. all the consultants I have seen in the UK have been balding men, and I don`t think they really understand how women are affected by hair loss!

Dr Mirmirani sounds great, but I live in the uk so can`t be part of her study unfortunately.

More information on the hair pieces would be good.
Excuse my ignorance, but is Plaqenil the same as Hydroxochloroquine that we seem to be taking in the UK?

Comment by Paula uk on July 21, 2013 at 4:06am

Hi All,
Just wanted to add my THANKS to all of you lovely ladies who have posted these wonderful and informative pieces - They are so helpful. Thankyou xx.

Comment by AC from CA, USA on July 20, 2013 at 11:29pm

Hi Ladies,

I will snap some photos of my clip design, but not until next week. I'm heading out for vacation tomorrow.

Simone--Latisse is crazy expensive, but the generic is not so pricey. I've gotten it on Amazon for less than $30/bottle and that lasts over a month. Well worth it to me! The stuff I use is called Careprost and there are active listings there now for $26.90/bottle.

April--I am just starting the Plaquenil in earnest, regular dosing. In the last three months, I took it basically only when I was freaking out and succumbed, but it was certainly not daily. Maybe twice a week at most. I've been taking it twice daily now for just a few days and I am trying to acclimate to it. It makes my tummy a bit grumbly and pained. That is a common side effect, but it subsides for some. I'm going to stick with it and hope that problem goes away.

Comment by April on July 20, 2013 at 8:26pm

AC-Just wanted to add another really big thank you for sharing all of the information from your doctor. It is unbelievably helpful for those of us who don't have access to doctors who know much about FFA. I would also love to see how you designed your hair clips. I haven't really started taking any medications yet, although I am currently receiving xtrac laser therapy. Have you taken any systemic drugs? Do you think you will start? Thanks again

Comment by Simone NJ USA on July 20, 2013 at 6:43pm

AC: thank you so much for sharing your information..I was told by my Derm that Latisse can surely work for the eyebrow, but the thing is once you stop using though you will lose the hair and Latisee is extremely expensive which Insurance usually doesn't cover. I am also very interested in your hair clips...are you planning on marketing these clips? I would love to try one...

Comment by Kath UK on July 20, 2013 at 4:48pm

AC - thank you so much for all the information from your dermatologist that you've shared. I've lost 2.5 inches of hair and I'm taking Hydroxychloroquine (although I don't much like taking systemic drugs either) in the hope that I might be one of the 50%+ for whom this medication works.
I've started to wear hairpieces and I'd love to see the ones you've designed yourself.
Also the information about eyebrows - I didn't know there was a possibility they might re-grow with the use of Latisse.
Thanks again for all the info. You're a star.

Comment by AC from CA, USA on July 20, 2013 at 2:54pm

I just want to also note that Dr. Mirmirani and Dr. Harries are both doctors credited in published research articles on the CARF web site, so these doctors really seem involved and interested in cracking the cycle on scarring alopecia. It's extraordinary that we have members here who are getting direct treatment advice from both of these experts. In that sense, access to this forum is a blessing.

Comment by AC from CA, USA on July 20, 2013 at 2:45pm

Hello again!

Pam--I am from Sacramento and Dr. Mirmirani is in Vallejo (90 minutes away from me). You don't have to be a Kaiser member to be in her study, but you do have to go to her office for photos, biopsy, and exams at times. Up side-- you may get the benefit of new treatment experiments? I posted this before, but the study info is at http://www.permanente.net/homepage/kaiser/pages/c12551-48357.html

She and her partner (a molecular biologist) are heading up the study. The molecular biologist is digging into the mitochondrial research, so I wonder if this study could allow one the benefit of laser treatment therapy. Something to ask, for those interested. Since I wasn't actively inflamed as far as she could tell at the time of the visit, Dr. M didn't ask me into the study, but said she will do so if I go active again. Less than a week ago, my scalp was actively inflamed (go figure how that often happens with highly anticipated doctor visits).

I might be able to post a couple of photos of one of my three clip-in pieces to show how I put them together. The key is finding hair that matches your texture, finishing the clip with covering hair so neither the clip or wefts are visible at all, and then cutting the hair to your style so it looks natural (I angle mine). My hair was always fine and thin, so the extra hair on the clips also adds much-desired thickness for me. Honestly, if I'd figured this out even without having FFA, I would have used this idea just to add volume. I will be traveling to So Cal (Dana Point) tomorrow for beach time next week, with my clips in place. :) I return for home on Friday, but would be up for trying to arrange to meet tomorrow evening, or for a morning coffee on Tuesday (before 11 am) or anytime on Friday before I leave the area. With that, I could show them to you in person. I've actually thought about making them and selling them because they are quite useful for FFA sufferers or for those with thinner, fine hair.

To both Pam and Debs--your posts have helped me lots both for info and for the fellowship of what seems to be a similar voyage of discovery through the disease-- and this was one reason I wanted to memorialize and share with all what I got out of the visit.

Faith (in the whole of you are, no matter the hair), Courage (to face whatever comes next with the knowing that you CAN) and Peace (in accepting what is with minimum emotional turmoil) to all--AC

Comment by Debs on July 20, 2013 at 2:05pm

AC, a massive thank you from me too... this is fantastic information, it is very reassuring to know that derms both sides of the Atlantic are using the same drugs and that new research is being done. I also realise that what you said that even if I am losing some hair with the plaqeunil I would possibly be losing even more without it.
T have printed your notes out. I will definately get this supplement. XXXXXXX

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