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Comment by BubbaLu on April 30, 2018 at 10:05pm

CurlyK,

please look at my comment beliw regarding Juvaderm.  I feel it was ABDOLUTELY the catalyst for my FFA.    

Comment by CurlyK on April 30, 2018 at 9:58pm

I’m going to the CARF conference! I can’t wait to actually meet people with the same condition that I have! No one understands like all of you do. 

If you have any questions you are interested in hearing more about, let me know and I’ll make a list and see what answers I can get there. 

Comment by Wyobalance on April 30, 2018 at 8:46pm

Halfbakedwho I wish you could make  it to the CARF conference.  Maybe you can attend the next one and be a presenter.  Your posts are hilarious!  

It's not on the conference agenda, but there will be a Show & Share session after lunch on Sunday.  A patient get-together to Show items, and Share ideas for camouflage.

There is also a Friday night reception.

Here's the CARF Conference agenda (Philadelphia June 8-10)

http://www.carfintl.org/_docs/Patient_Doctor_Conference_2018_Progra...

And the online registration

https://interland3.donorperfect.net/weblink/WebLink.aspx?name=E3430...

Comment by Plf on April 30, 2018 at 6:56pm

hi PBsunshine1, interesting re progression on the disease, it is hard to say but Ia hairdresser noticed the inflammation at the front of my hair line probably about 4 years ago, I treated it with some cortisone cream I had at home and it settled, It wasn't painful or itchy and if she hadn't pointed it out I wouldn't have noticed.  as for eyebrow thinning it has probably been occurring for about the last 6 years at least.  Loss of arm hair 18 mths ago, still have eyelashes, major hair loss last Christmas..again not associated with itchiness or pain..hope this helps

Comment by Anonymous on April 30, 2018 at 5:27pm

I have decided to do botox for the first time. I've read some older comments on botox. Juvedirm looks bad. But, anyone doing botox currently? 

Thank you,

Comment by PBsunshine1 on April 30, 2018 at 8:15am

Does anyone really know what the first symptom is? I lost my eyebrows years ago arm hair long before that. Early 2017 started losing my eyelashes. Thought it was because I have dry eye. After years of Derm and eye dr. appointments no one connected the dots until late 2017 when I went to my derm about my sore scalp and hair loss.

Comment by Plf on April 30, 2018 at 5:11am

Ha halfbakedwho..I think your spot on..went to the gp tonight so she could tell me the outcome of my pharmaceutical review..first she couldn't find the report and then said it contained nothing new...she still had nil knowledge of the condition..now I work in health..not at a dr level..but if a Client came to me in December with a condition I didn't know I would at least do some internet/ medical research ..I would be curious..not so.. so today again I am being brave nil meds..keep my liver safe..until my eyebrows fall out on my pillow or I lose another cm from the front .  Have started spearmint tea infusions..will let you know how it goes

Comment by Halfbakedwho on April 30, 2018 at 4:28am

wow... I love the fillers and had them a couple of years ago. However, my hair loss started about a year before I had fillers for the first time. Since then, it's so expensive that I have had nothing since fall of 16. I didn't have any bad reactions though.

My Doctor (the Famous Man) in Paris called me back last week and laconically informed me that my current inflammation couldn't be helped, and to continue down the same path he'd prescribed. Not that I was expecting anything else. It would seem he's resigned to the thing "burning itself out" (whenever that would be) so he could proceed to the hair-graft treatment. 

Someone on the FB page was talking about getting a clear diagnosis on whether the follicles are entirely destroyed in the FFA or just damaged, in which case it would be possible to reanimate them??? It seems to me that the doctors - knowing they can't cure it and they can barely slow this mess down- aren't really current in the literature, and don't seem to care that they're not current. We're not dying, we're middle-aged women, who the hell cares... : (  ?  

If any of you are going to the CARF conference, I hope you could post some of the things you learn there. I wish I could go - that would be amazing. 

Comment by BubbaLu on April 29, 2018 at 7:48am

My daughter recently spoke with her dermatologist about my newly diagnosed (yes, biopsy confirmed) condition.  Her dermatologist had just been at a conference, one of the topics was the suspicion that fillers (Juvederm) has been associated in more and more cases with auto immune disorders. That derm is now screening people before injecting with fillers.  However, I must have had a dormant autoimmune, I would not have known before this showed up.     About 10 months after I had my first and only Juvederm, my cheeks flared, were hot, itchy, then scaled and peeled.   This happened 3-4 times in a matter of months.  At the end of these flare ups my FFA began.   I am convinced the Juvederm was the beginning to all my problems.  The autoimmune was attacking the Juvederm then when it was gone moved on to my scalp.  I will not be surprised to find a class action law suit against the product.  Have you heard anything about this?

Comment by Jess on April 29, 2018 at 12:40am

Pauliegirl- I wish! He seemed reluctant to code my last appointment as being for rosacea since I also inquired about the isotretinoin for the bumps. I think the only reason he did was because he ultimately only prescribed medicine that's labeled for rosacea. The best price I can find is through Costco and it is still well over $200. Ugh. I came across one study that showed some success with antimalarials/antibiotics. If this metrolotion doesn't work, I may head in that direction along with some laser treatments. 

Having said that, I thought my loss had pretty much stalled with the Dutasteride, but now I'm thinking I've lost some more in front of my right ear. I know the isotretinoin showed good results with stalling FFA in general, not just the bumps, so maybe I'll change my mind if it worsens. Either way, it's all pretty frustrating. I hope they figure something definitive out soon!

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