Replies to This Discussion

Permalink Reply by Annie on June 1, 2015 at 12:41pm

Rachel218, my shedding doubled about 2 weeks after I started using Rogaine, then went back to my normal ffa shed after about a month.  It's hard to watch all those hairs falling out, but it's a good sign that old hairs are being pushed out for the new healthy hairs that are sprouting.   I use the foam & didn't notice dandruff, but my scalp was tender & itchy for at least a month as my scalp adjusted.   

Permalink Reply by Rachel218 on June 4, 2015 at 9:24pm

Thanks for the reply!

Permalink Reply by NatalieW on June 11, 2015 at 4:54pm

Hi Rachel, I did notice some shedding when I started Regaine but it only lasted a few weeks. I am very sensitive to any hair loss, so it's always to notice a big shed.

Permalink Reply by Alice on June 1, 2015 at 7:32am

Charlotte, this may sound silly but you might want to consider trying spearmint instead of Avodart. If you read the commemts on Amazon from womem with polycystic ovararian syndtome (PCOS) you'll find that may of them swear by its antiandrogen properties. I've been using it along with Rogaine, turmeric and ginger and believe they are helping.

Permalink Reply by Charlotte on June 7, 2015 at 3:22pm

Dear Alice, that sounds very interesting. I'm going to try it. do you take capsules? 

Permalink Reply by Alice on June 15, 2015 at 5:45pm

Charlotte, I was drinking it as iced tea using 2 bags, which was very refreshing, but found the capsules are cheaper and easier.  I buy them on Amazon. I also take turmeric and ginger and drink oolong tea for inflammation. 

Permalink Reply by Charlotte on June 22, 2015 at 3:38pm

Thank you so much! I try to order them. 

Permalink Reply by Mike'sDeb on June 4, 2015 at 10:02pm

Hi,

I too was diagnosed premenopausal. I was 48 when biopsied but hair loss started at least a year before that. I just turned 50 and am still not menopausal. I used clobetasol for several weeks in the beginning but never felt comfortable starting any other side effect laden treatments. I do use rogaine and it works great for the eyebrows! It has thickened the rest of my already thick head of hair. My bangs cover the 1.5 inch or so hair loss and shiny area. I try to keep it all in perspective and am very open to others about the condition. I strive to live the healthiest I can. Although I do have other auto-immune disorders...hypothyroid and IBS, I also have a history of anxiety and do my best to control what I can and let go of what I can't. I eat clean and healthy, I walk at least 4-5 miles/day, do yoga and try not to let stress get the best of me. In looking back, I went through a stressful time at the time I suspect my FFA started. I use redken cerafill retaliate shampoo and conditioner. My dermatologist felt I was in remission when I last saw her about 3 months ago...I see her again in 2 weeks.

Permalink Reply by sadandunsure on June 12, 2015 at 6:50pm

I'm 31 and just got diagnosed with this on Wednesday (confirmed by biopsy and of course my balding temples). I'm wondering how fast this progresses? Is severity related to itchiness/redness/bumps - I have no symptoms except white scale if i scratch at my roots, also no eyebrow thinning. Has anyone here (or know of women) who made it to the end - i.e. stopped losing hair? What was the damage 1inch? 5 inches? And how long did it take to stop? Do you feel it has been a steady recession? Or do you think you recede a bit, stop for awhile, then recede again?

They say this isn't genetic but my mother also had this hair loss (starting in her 50's), thus I thought some AGA women just lost their hairline and temples. If it's not genetic/hormonal, the only other thing we had in common was taking hydrochlorothiazide (which i saw can cause lichen planus but i didn't see lichen planopilaris correlated with it) - i'm wondering if this was a drug induce autoimmune response to HTZ?

I guess I'm bummed that it's happening so young, I would feel much better if I were in my late 40's or 50's since I just feel like I wouldn't care about wearing wigs since so many women in that cohort do...plus all of my friends have thick beautiful hair :( I don't therefor bangs might not be an option if/when it gets to that point. I'm also single, so not knowing how fast this may progress has me down in terms of finding someone who'll love me with no hairline. Lastly, I'm also African American....this seems extremely rare (or probably under diagnosed as many diseases are in the black community) and makes me feel even more isolated.

Sorry for the long post...just a lot to deal with

Permalink Reply by Chris on June 13, 2015 at 5:12pm

Hi sadandunsure,

I'm sorry this is happening to you.  I had many of the same worries when I was diagnosed at 41.  My loss has progressed at almost an inch of hairline a year. I've lost about 2-2 1/2 inches and my eyebrows.  I've also lost all the hair on my arms.  I imagine the rate of progression is a little different in everyone.  I've been able to cover it effectively for three years, but I'm getting to the point, where I can't, but the progression has been slow enough  to let me get used to the idea and research my options.  I went to work for the first time on Friday without my eyebrows painted on, and with my hair loss showing.  I was really nervous about what people would think, but everyone was great.  I find myself accepting it more and more.  I've found a lot of support here, so welcome!

Permalink Reply by MnM on June 22, 2015 at 9:56pm

Hi Sadandunsure,

Welcome to the group, I just joined a few months ago. I'm 32 and was diagnosed back in 2011. It seems like more and more younger women are being diagnosed with this. They say it's not genetic, but my mom was also diagnosed, but not as young as me. She was in her 50's. I just went to my first CARF support group this weekend and I must say it helped to be with other women dealing with the same diagnosis. Good luck to you.

Permalink Reply by sadandunsure on June 22, 2015 at 10:43pm

Thanks for your reply, I plan to go to a CARF meeting next month - although I must be honest, with the bleek outlook of scarring alopecias, this meeting might panic me even more.

I think there are now 3 or 4 of us on AW who had a parent with it, it definitely makes me question the whole "not genetic" train of thought, it may be a rare recessive trait or we might have a gene that reacts to something in the environment, in any case, i don't think mother/daughter incidences are coincidental. That's what's driving me crazy, there are literally no explanations for cause, no answers for how bad, how fast, and which areas it will target, and no proven treatments - even transplants are pretty much off that table! I don't have much faith in potential research and definitely not cures as scarring alopecias are rare and therefore don't have the potential ROI that effectively treating male/female pattern baldness does; and I don't believe any medical fields are looking for cures to diseases as more money is made from treatment. Seems pretty dumb a disease would target the front of the head rendering the rest of our hair pointless (if a severe case).

Sorry for the rant, I've been pretty up and down with dealing with this, today is a bad day. I'm hoping I can get over it and get back to life, this diagnosis has killed my appetite, my ability/desire to go to the gym, i've even "worked from home" more often as I have days full of anxiety.

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