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Comment by Barbi Cooper on September 11, 2012 at 10:58am

I live in Utah, south of Salt Lake and have thought a long time about getting a support group here. It would be nice to be able to help each other! I'd thought about putting an ad on Craig's list or something comparable. Anyone have any other ideas?

Comment by Amanda on September 11, 2012 at 10:40am

Hey there! Anyone from this group in southern Ontario? I am interested in learning more about others experiences and maybe starting a meet up. I am in Toronto but willing to travel a bit if need be. Would love to hear from you!

Comment by Angie P on July 2, 2012 at 3:49pm

Hi all! I've been bombarded, so I haven't been around much. Hope everyone is doing well!

Comment by Amanda on June 14, 2012 at 7:34pm

Hey there fellow CA people. Where is everyone? I feel like we are rare. Although my specialist said that they treat many people like me with the steriod injections. I am desperate for a support group for us. Any thoughts? I would love to know what stage you Re in with the condition and how you are coping with the progression. Hope we can stick together!

Comment by Tiffani on August 18, 2011 at 10:23am

Hi all, yeah, the only topical medication the Dr prescribed for me was Clobetasol Propionate; the brand name being Olux-E. I only use it every once in a blue moon, but during my last visit in April, I asked the Dr can she prescribe something cheaper since Olux-E can cost anywhere from $55-$100 a can. She prescibed me the generic, liquid, version of Clobestasol Propionate. I have only used it once for a comparison and it does not compare, IMO, to Olux-E, so anyways I'm no longer a member of a health insurance plan (due to my full-time committment as a nursing student) so I will have to stretch these medications, if needed/possible.

Comment by Carol Sue Cain on August 17, 2011 at 11:59pm

I was on plaqunil for 6-9 months and it did nothing for my inflamation. I have been on Actos for 9 months and the inflamation has significantly improved. I have a check up next month and the Dr will decide whether to continue Actos for another 3 months or stop. I have some topical treatment for itching, but have not had to use it for months. Well see how things go next month.

Comment by Angie P on August 17, 2011 at 11:40pm

Hi Carol. I have not pursued any treatment other than the Olux foam. I needed it in the beginning to get rid of the itching and burning. I decided against any shots or transplant. I have not heard of this medication ACTOS. Is it working for you as you expected?

Comment by Carol Sue Cain on July 11, 2011 at 1:10am

Helllooooo??? Anybody out there?
I was diagnosed with Cicatricial Alopecia and my dermatologist (who is a researcher in Cicaticial Alopecia) put me on ACTOS 15 MG once a day. This is actually a drug for diabetics....anyone else on this?

Comment by Carol Sue Cain on April 17, 2011 at 12:40am

Hello! I'm newish to this site. I was diagnosed with Frontal Fibrosing Alopecia one year ago. My hair loss has slowed, but I know I'm looking a chronic condition for the rest of my life....It bums me out to think that the hair loss is permanent...on the other hand, reading the experiences of others, I wonder if it's really worse than constantly losing and regrowing and losing.. Anyway, I just wanted to say HI to my peeps. :)

Comment by Jill Hickman on January 10, 2011 at 7:12pm

I have just joined this site-my first related to alopecia. I was diagnosed with LPP about 2 years ago but started noticing patchy, thinning hair about 1-1 1/2 years before that. My treatment was limited after initial diagnosis because I became pregnant. I took plaqunil for almost a year, but recently stopped because my husband & I are trying for a second child. My current treatment is steroid injections every 4-6 weeks and topical foam/lotion that i use every night. My balding continues to worsen and it is getting more difficult to cover up. I'm very self conscience about it, but I'm also beginning to come to a new level of acceptance. I think some kind of hairpiece/wig is inevitable unless I just "let it show". I'm just not sure what to try first. There are soooooo many options out there that it's overwhelming. I am considering going wig shopping but have no idea what to buy. Most people would think it's way too early for me to buy a wig but I'm ready for a good hair day-even if it's not with "my" hair. Any suggestions?

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