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Comment by Sad in chicago on June 4, 2015 at 4:00pm

I agree with all....summer is a little tougher with wind, swimming and exercise, but as you noted, there are worse things.   I should eat healthier and am working on that.  I did stop taking shots and extra medications; I don't even use rogaine any more.  If I see a derm who does hair restoration surgery (transplant) and there is hope i will certainly let you all know.  

Comment by Mel on June 4, 2015 at 3:17pm

Thank you, Jean. It can be depressing, but I do love that I seem to feel just fine. I can still exercise and hike. I was diagnosed on the day of my 51-year-old friend's funeral. This is not what I imagined for myself, but grateful that that's all it us got now. I've read how one autoimmune condition may make you more vulnerable for another so I'm eating healthier than I ever have in my life !

Comment by Jean on June 4, 2015 at 3:02pm

Like everyone else, living with FFA can be really depressing but the other day, I made a conscious effort to look on the bright side and have come up with a few positives:

I no longer have to shave my armpits

I haven't grown 'granny hairs' on my chin

I don't have hairs on my top lip any more

I don't need to shave my legs

I've had my eyebrows tattooed and they're a much better shape than pre FFA

I have no pain, FFA isn't contagious and it won't kill me!

I've got a lovely wig that I wear when my hair looks a mess 

I have my 'down' days but several of my friends have far worse ailments - some life-threatening.  At the end of the day, it's only my hair and I'm determined not to let FFA ruin my life!!

With my very best wishes to you all

Jean

Comment by Mel on June 4, 2015 at 1:58pm

I agree, Chicago. I go back for my second trip to the dermatologist next week and I think I'm going to tell them no more shots. One round was bad enough. It wasn't that terrible, but they do say there is NO KNOWN effective treatment. So why inject ourselves with stuff that leaves a dent and possible speeds it up?? I want to do anything that possibly makes it go into remission, but nothing I've read shows any link between remission and shots. I am still on the AIP diet... almost a month now. I feel no different, but if our condition is a skin condition (is it?) the skin is a last priority organ so it will take time... I was also trying castor oil. Seems to help some on eyebrows. Coconut oil seems so soothe my head. Leaving it on at night to see if it calms it down at all. Such a mystery.

Comment by Sad in chicago on June 4, 2015 at 1:35pm

My dermatologist was familiar enough to diagnose, but certainly has not been able to do anything about except declare she thinks there is nothing you can do.  She has recommended another derm who specializes in hair restoration surgery, I have called to see if they are familiar or had success with FFA, but have not heard back, which I think is so rude!  Anyway, if you are still interested, I will give you the name of my dermotolgist.  As I said great at diagnosing, but no great answers.

Comment by okalopecia on June 4, 2015 at 1:17pm

If your dermatologist  is knowledgeable on FFA, would you mind sharing his/her name and contact information. I live in OK and have been unsuccessful at finding and educated doctor with FFA experience. I am more than willing to travel to ensure I get best advice/treatment possible. I'm pretty frustrated with the dermatologist search. There are many doctors on the CARF list, however, I would like anyone's first hand experience as well. I know some of you are happy with your dermatologist and I would appreciate if you would share their information. If you don't want to post their information on here, you can email me directly: ddilldine@tds.net  Thank you in Advance

Comment by Sad in chicago on May 7, 2015 at 1:09pm

Agreed.  I hope it helps you.  I never had rash or spots, so didn't feel the need to treat.  Anyway, it does seem to be slowing down and I am just living with it, what can you do.  It is for sure the hair will never grow back.

Comment by Blondie on May 7, 2015 at 12:48pm

When I first went to my Derm my head was burning and my hairline was receding.. He gave me steroid jabs ..and put me on Planquenil and Toplical ointment ..he recommended Regaine and tumeric
..5 months on the burning rash and spots have disappeared , my hair loss had stopped and I feel great.. I do not feel like I am putting myself through anything I am just treating an ailment..it may be a great big coincidence ..but I know I feel a whole lot better now I am doing something than I did when I did nothing and hoped it would not get worse..if I had cancer I would get treatment so I am getting treatment for this...I also eat healthily and exercise but I was doing that before and I got FFA so that didn't help..I think we all have to do what seems right for us ..but it's certainly working for me and there is no evidence as to what causes it

Comment by Sad in chicago on May 7, 2015 at 12:27pm

Ladies, I really don't understand why you put your bodies through all these wierd medications and toxic stuff.  Isn't it bad enough that we have been afflicted with this ridiculous condition?  My derm tells me that all the meds you are trying have no evidence of working, gave me the same options, but I took a pass.  I am doing my best to be healthy, eat right and exercise (although always a problem at the gym with the way I look!!!!!), and just get through this and try to enjoy life as best I can and be thankful it is not terminal or something really awful.  With my wiglets I look as reasonable and as much myself as possible and that is the best we can do.  I am trying not to stress,although I certainly have my days.  But I feel taking medication for malaria, etc. can only add to the toxins or whatever that have already caused this. 

Comment by okalopecia on May 7, 2015 at 11:42am

Got it, thank you Sandy

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