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Comment by PamW San Diego, CA, USA on November 30, 2012 at 10:35pm

Judy, i was willing to go to Los Angeles to see someone at UCLA, but my insurance company would not approve. Everything I read says it can take 3 to 4 months for the plaquenil to work. I think that we just have to hope that we go into remission. In the meantime, hang in there!

Comment by Judy on November 30, 2012 at 9:46pm

Thanks for sharing Pam and Mari. I guess we three are doing the same treatment. Hydroxycloride is the generic for Plaquenil, right?
Actually, I am using Clobetasol lotion , a clear liquid. She said to use it every day or every other day. It cleared up the inflamation and itching right away. I also have been wondering if I should be using when scalp is clear. Still, the hair loss continues. I can't imagine another med with more side effects that Hydroxycloride. I was terrible sick for the 1st 2 weeks but now am fine and am glad i didn't quit. Thanks to this group.
I don't see my dermatologist until January. She said it would take about 2 months to see if the meds are working. She has one other patient they are following with FAA. Wish there was just one doctor who specializes in this in San Diego. I would think UCSD would be the best bet. I think that the reason they know so little could be that there is not a great amount of women with this and they just don't fund research for something that is non life threatening and with so few.

Comment by PamW San Diego, CA, USA on November 30, 2012 at 8:53pm

My impression was that the Clobetasol was to help with itching and burning. The itching is caused by the inflammation. So, if you are not red, sore and itching, then perhaps the inflammation is minimal(?) Just a guess. Mari, when you initially used the Minoxidyl did it cause you to shed? Also, can you tell me if you put it all over your head or in just the bald areas?

Comment by MairiM on November 30, 2012 at 8:06pm

Thanks for that, Pam. At least after all we've already found out, what you say doesn't come as any kind of shock. But I'd really like to know if the Clobetasol foam serves any useful purpose if there's no itching and burning, only the hair loss. The Minoxidyl has certainly made my remaining hair grow more quickly - needed cutting 2 weeks earlier - but I can't tell if the individual hairs are stronger.

Comment by PamW San Diego, CA, USA on November 30, 2012 at 6:39pm

I had an appointment this morning with a dermatologist at UCSD. He has treatd patients with this disease before. Basically, we know everything. He really didn't add to my understanding of the disease. It is an auto-immune disorder and plaquenil is the best treatment option because it has the least side effects. The other drugs have harsher side effects. There is no way to recover the hair lost. The hope is to minimize the itching and burning and scalp discomfort with Clobestasol foam and the plaquenil. Even if you can manage the itching and burning, you may still lose hair. Plaquenil doesn't work for everyone. He doesn't think the cortozone shots will really work. He didn't talk about Minoxidyl (rogaine) or finasteride. He is going to investigate the next step up for me (possibly Actos). He does not want to prescribe that to me now because there is a "black box" warning for possible serious side effects. The disease can go on for years or just stop. No one knows. Wish I could give you all better news. Looking forward to hearing from Celia . . .

Comment by Jules UK on November 28, 2012 at 5:07pm

Wishing you the very best tomorrow, Celia! If Dr Harries wants willing volunteers for any feedback about having FFA, he knows where we are! X

Comment by KarenGinny - Iowa, US on November 28, 2012 at 4:57pm

Good luck to you tomorrow Celia, hope you get all your questions answered. It will be great for all of us to hear what your doctor says. And Good luck to Pam also. I often wonder about how many women have this condition but don't know what it is and can't afford to go to the doctor for a proper diagnosis. We have fairly good insurance but my insurance company wouldn't pay for some of my treatment -cortisone injections- saying that it was cosmetic - and not a medical procedure. So having hair is not medically necessary, apparently. That really made me angry. I'll bet there are a lot more women suffering from this than we realize. And since most doctors have never heard of it, they aren't getting any help. very sad.

Comment by Liz on November 28, 2012 at 4:37pm

All the best for tomorrow Celia xx

Comment by MairiM on November 28, 2012 at 4:29pm

Like everyone else, looking forward to what you and Pam can find out for us. All the best for tomorrow, Celia - hope it goes well.

Comment by Heidi Short UK on November 28, 2012 at 1:10pm

Celia and Pam just a quick note to wish you both a sucessful or informative meetings with your doctors. We are all looking forward to hearing any new revelations, although I think us as a group are quite knowledgable on FFA, and fast becoming experts ourselves!!! Best of luck we will be thinking of you!x

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