Comment

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...

Comment by Chrisy, MA USA on July 23, 2013 at 8:05am

Hello! I am also wondering if plaquenil will ever work for us. But We have no choice than to believe is helping somehow. I don't know anybody that had FFA and have seen results but I can tell you from personal experience that there is hope. My husband has a very rear autoimmune disease as well where he showed some inflammation on his forehead. For a while he treated it with topical steroid injections and steroid cream with no results until he changed dermatologist and he started plaquenil twice a day. After about 6 months he had no signs of inflammation on his forehead. This dermatologist also recommended vitamin D3 and omega 3. The 50% that we all hear might not be specifically for FFA sufferers but for all the people with autoimmune diseases with inflammation. Wishing us all the best of luck with this medicine!!!

Comment by KarenGinny - Iowa, US on July 22, 2013 at 5:24pm

Happy Birthday Celia! Hope you have a wonderful day!

Comment by sammi on July 22, 2013 at 12:39pm

Happy birthday Celia and thank you for the work you do! have a lovely evening Sammix

Comment by Annie on July 22, 2013 at 10:29am

Hello everyone,
AC, thank you for your information. I'm definitely going to go out & get some Reservatrol after work today. One thing that I'm also thinking about is attacking this disease through my digestive system with probiotics. Is anyone taking them? If so, do you think they're helping?

Comment by Liz on July 22, 2013 at 8:09am

Happy Birthday Celia. Have a lovely day xx

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