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Comment by Afraid on February 28, 2018 at 9:52am

Hi all, 

apologies for going over old ground but just wonder if I’m missing anything...& I’m desperate.  My scalp has been inflamed and ‘spongy’ in parts with some scaling and of course obvious hair loss since August.  I sporadically use cocois, dermovate daily (4 months) and hydroxychloroquine daily (3 months) to no avail.  Is there anything else I can do?????   My scalp is so sore and I feel helpless.  Can LPP/FFA be so significantly active with such rapid progression for this period of time? How long will it continue for?  I’d hate to think I should be doing something else other than just watch my hair disappear  rapidly.  

I feel I’ve aged 10 years in 6 months :-( 

Comment by illustr8r on February 26, 2018 at 1:14am

@Beez I have a photo of my 94 year old Grandma with her thick head of hair and full eyebrows. Alternatively, I have baby pictures of myself at 2 years old and it appears that I am reverting to the hair I had then...although 2 year old me still had more eyebrows than I do now. $&##?!#%!!!

Comment by Anonymous on February 25, 2018 at 9:01pm

Beez is correct. My high deductible plan is so high, I forget that derm would be covered if I just spent enough money. Sigh.

Comment by Beez on February 25, 2018 at 7:37pm

I got the 'most women's hair and eyebrows thin as they get older' line' after about $7,000 worth of blood tests, $160 worth of various creams , 2 dermatologists and an endocrinologist. Well my mom had thick gorgeous brows til the day she died so I was skeptical. Did some research of my own online and when I typed in "women's hair loss associated with age", BAM! Up came FFA. I knew this was what I had. Went to derm #3 and told her this is what I think I have And handed  her some print outs. She did a biopsy and confirmed it. (Thank you Dr. Me.)

at Anonymous....I too have thinning on top. Dr. Hair Specialist in Philadelphia (4th dermatologist that #3 sent me to) said it was FFA with female pattern balding. What the hell?? He offered no help except to continue  plaquinil and avoid sunscreen.

At Halfbaked...yes, dermatologist visits are covered by insurance but depending on the type of plan you have there might be significant co-pay up to a specific dollar amount.

sigh......my scalp hurts just thinking and talking about all this!

Comment by illustr8r on February 25, 2018 at 4:21pm

@Anon I got the “as we age” speech more times than I can count. Although I like my dr it’s beyond frustrating that they don’t hear you when you are shouting, “this isn’t normal!!!”

Comment by Anonymous on February 25, 2018 at 2:21pm

Also lost my eyebrows. This happened at menopause, so it must be hormone and thyroid related  Dr. told me I was getting old. Last time I saw her. Took the autoimmune tests on my own through independent lab, and tested high. 

Comment by Anonymous on February 25, 2018 at 2:08pm

I have some thinning on top, no temple hair, lots of hair in the back, with the high nape line. I am writing down every suggestion given for hair products and otc products. I've seen derms and endos., and paid a fortune. No, my insurance doesn't cover, and they didn't seem to have any solutions. My endo. said there isn't  a lot done with women's hair loss. I may try again, but I want to cover all the bases I can. I am grateful I found this group. No one I know seems to have this problem. I'm trying to tell myself, it's just hair, but I'd really like it to stop.  

Comment by AnnieMay on February 25, 2018 at 11:57am

Anonymous, Halfbakedwho-I discovered the same loss at the nape of my neck too. It's been itchy there so I knew something was up. Mine is higher and thin but I also have patches of hair loss there as well?? Is that FFA or is something else going on? it's also come in on both sides of my neck there. Now the skin there is white and smooth.  Ugh. .I am a pony tail girl so this makes me so sad.

Do you have "diffuse thinning" all over as well? When I looked at the back of my head my hair there is so thin that I can see my scalp. Someone called it "doll hair" awhile back. The texture and weight of my hair is so different that it feels so strange on my head. Should we be using minoxidil there? Or as so many of us have said Does anything we do really matter or will it just keep creeping along destroying everything in it's path. .not sure what the point of seeing my current dermatologist is anyway? it's embarrassing to have her inspect my head with a magnifying glass only to tell me there's nothing I can do. 

One positive note- I have been using a product by Just Natural Hair care that I like (Adult Women's Hair Loss Treatment). They have a lot of products that use natural oils. Messy and but I like it.

I've also been using Bumble and Bumble Thickening Dry Spun Finish spray for those flat hair days. And I love a product by Billion Dollar Brows. Its a brow powder but I also us it for the patches of loss in front of my ears. Just to darken it a little there so it's not so noticeable. I've also used it along my hairline and it seems to stay on for a good part of the day.

Thank you illustr8r. I will give Living Proof PHD a try.  

Just another Sunday dealing with all of this. Time to enjoy my day. Thank you all for being there!

 

Comment by Halfbakedwho on February 25, 2018 at 11:10am

Isn't a dermatologist covered by insurance??? I haven't lived in the States for 20 years, I hate to give you insurance-envy, but that's one worry I really don't miss. 

Anonymous, I am losing hair at my nape too. It also feels like other parts of my scalp are sore - even on top. I'm going to see new Dr. Famous-Man dermatologist on March 8th, so we shall see. I have Abandoned Hope in terms of medicines, or whatever they throw at me, though I'm still willing to be a relatively good sport and try things for a bit. 

Since my official diagnosis last June/July, and beginning treatment with minoxidil and cortisone, I have lost more hair, and now it's the nape too. I feel like they are throwing things at us "for hair" but they really have no idea how to treat this specific problem. I also take iron. And other stuff, vitamin D, etc. Again I feel like they just throw whatever at me and say "hey, see if this does something." So, I do. And it doesn't. 

These days I'm just like "Fine you stupid FFA, just keep FFA-ing with my hair, since that's what you are going to do anyway." It's like trying to deal with my cats/husband/teenage sons... so the solution for me is Accept and Adapt. 

These days I am into oils. I walk around quite greasy-headed (in the HOUSE) and think positive thoughts. So far my hair hasn't caught on fire. 

My foot injury (planar fasciitis) is more upsetting to me right now than my hair - no dancing : (, no hiking : (((, never mind jogging etc. 

How does one deal with anything if you must sit still? Not my thing, sitting still. 

Comment by Anonymous on February 24, 2018 at 7:54pm

I just looked at the nape of my neck. Yikes. My hair line is probably one to two inches higher than it should be. I wear my hair longer so it is disguised. But, has anyone discovered how they can stop this? Derm costs a fortune. I wear headbands to hide the loss on the sides of my head and forehead now. 

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