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Comment by Annie on July 25, 2013 at 10:44am

Brenda, I used 5% Clobetasol lotion for a little over two months. My doctor said that my scalp might be tender for a few days until I got used to it, but the itching & burning never stopped. The worst part was that I was never able to forget about FFA with my itchy, sore scalp. (My husband remarked that I reminded him of a monkey always scratching my head.) My doctor seemed surprised, but said I could stop using it for a few weeks, then try using it every other day. He also said I might be using too much. It only takes a tiny bit.

Comment by Brenda, IL US on July 25, 2013 at 10:23am

Hi Debs. Thanks for the welcome. I see my dermatologist Tuesday because the Clobetasol seems to be causing more inflammation and itching than what i started with. Has anyone had this problem? I have some Desonate gel for eczema that i put on my scalp that is helping now.

Comment by Debs on July 25, 2013 at 5:01am

Brenda, hello and welcome to the group. I am sorry you have lupus to deal with as well as FFA. We are all in this together and having each other in this group that Celia started only a year ago is a life saver for me. Any questions you have please just post on here and we will all try to pitch in and help. XXXX

Comment by Annie on July 24, 2013 at 3:48pm

Brenda, I'm glad to hear that you think Plaquenil has helped. We all take it with the understanding that we have a 50/50 chance that it will slow down the hair loss. I've made up my mind to expect that it will work for me. Maybe there's something to be said for the placebo effect.

Comment by Brenda, IL US on July 24, 2013 at 3:10pm

Hi Carol. We never know what lifes going to throw at us. My parents died a month and a half apart in 1992 and then i got fogged with farm chemicals nine days later. Think thats what brought on the lupus. Im sorry youve had to deal with so much. Try the plaquenil again. I think its helped me. I know its helped my lupus.

Comment by Brenda, IL US on July 24, 2013 at 2:42pm

Thank you Annie. I've learned a lot from reading all the posts. And its so good to be able to share thought and feelings.

Comment by Annie on July 24, 2013 at 12:55pm

Brenda, welcome... You will find tons of support as well as information on this site.

Comment by Brenda, IL US on July 24, 2013 at 11:46am

Hello Ladies. I have read all of your posts and i don't feel alone anymore. I was finally diagnosed with FFA last month but I've had it for at least two and a half years. Docs told me it was a symptom of my lupus until this May when my lupus dr referred me to a dermatologist. The derm. i saw in June of 2012 thought i had FFA and then decided it was lupus and told me to use rogaine. Now i'm using clobetasol lotion and getting injections in scalp and eyebrows. My scalp has receded an inch and a half and my eyebrows are almost gone. I thought i had accepted what's happening but i dream about it so I'm not there yet. Totally computer illiterate so don't know how to put a picture on. I'm from southern IL and i go to St Louis, MO to dr. I'm going to try the tumeric. I take biotin and Viviscal. I've been on plaquenil for two years. So glad i found this site. Thanks to all for the info.

Comment by Debs on July 24, 2013 at 4:14am

Carol, you are absolutely right, the first time I went to my GP in December 2011 when I noticed a small amount of hair loss at my temples he said I had alopecia... but didn't know what type!!! I had to go to a trichologist in London to get a diagnosis of FFA. Once I knew what I had thanks to Celia who started this group I have been able to get myself referred to Dr Harries that is an expert in FFA here in the UK. I am sure there are lots of ladies with FFA that are undiagnosed.

I went back to my fantastic lady, Belinda Hayle, yesterday and had the finishing touches to my eyelash enhancement. As I mentioned before, it doesn't hurt at all getting the work done, I went shopping afterwards and bizarrely a monk of all people called out to me in the street that I have beautiful eyes!!! Good grief, how funny but at least I know it has worked. XXXXX

Comment by Annie on July 23, 2013 at 10:07am

Chrisy, I'm with you... I also wonder if I'm in the 50% group that Plaquenil help, but it seems to be my only hope at present. Everything I read says that FFA needs to be caught early to stop the hair loss. Does anyone know what stage "caught early" is??? Anyway, I'm trying to stay positive and not let this awful disease take over my life. I saw my doctor last week for my four-week checkup since starting Plaquenil. He likes to do blood work at that point to make sure there are no negative effects from the medication. He was pleased that the redness on my scalp has already cleared up (although it's still tender) and scheduled another appointment in 3 months. I have no idea if it's the medication, vitamin D, turmeric, or even luck, but let's hope it's a step in the right direction. I picked up a bottle of Reservatrol yesterday, so I will add that to my list of pills. I think it was Debs who said that this is an expensive disease. I couldn't agree more...

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