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Comment by Minter on October 4, 2019 at 8:45am

Thanks for the info illustr8r, I'll try the no rinse one next, the rinsing is a pain! I've not had any shedding or knots like you mentioned, I think my hair is too short now to get all tangled up!

Halfbakedwho, Haha glad you cured your FFA!

But, I know what you mean- I am 54 and I keep thinking ok, by this time next year my hair will be gone, other days I think well if it just stops now I can deal with my hair now.   I don't think I could tolerate a full-time wig either in fact I know I couldn't as when I tried the LE intralace it drove me batty not being able to take it off.  I'm almost a 100% certain that when the time comes I will shave my head completely and when needed or wanted use a hat, scarf or wig.  I'd rather have a completely bald head then a bit of scraggly hair left on the back of my head if I am hat-less, scarf-less or wig-less.  I know this because my mother has FFA and I see what is in my future for my hair and it is sad to see. 

Comment by Toby on October 4, 2019 at 7:49am

Hi, my hair gets a big knot in the middle also. When I have the knot I wash my hair with shampoo and then a detangler. I have Shea moisture detangler. It eliminates the majority of the tangle. Thanks.

Comment by illustr8r on October 3, 2019 at 5:00pm

It’s always good to hear from you @ HalfBakedWho!

So, has THIS happened to you ladies? My hair had some issues a few weeks ago but it’s doing well-shiny healthy and no big sheds. BUT Monday I got a huge knot in my good hair, towards the middle of my hair. Not sure how-but there it was. I must have pulled out about a clump of 6-8 hairs. The end of the hairs were tied. Since Monday I have had a shed from the same area-seeing loose hair in front of my eyes. I pull it and it comes out-the ends are all curly. It’s freaking me out. I’m using Clobetasol again. 

Comment by Halfbakedwho on October 3, 2019 at 3:08pm

The weirdest thing - in the middle of my comment here my computer just switched off! A Mac - not supposed to do that shirt. If you know what I mean.

ANYway as I was saying, I am going to have to get out of my lazy-denial hair-space and look into more natural cosmetics and sunscreen. If you have other recommendations, I am all ears, which you can even see more of these days. If you are into that. 

Some days my hair situation feels scary, and I know you all get it. I notice the top thinning and thinning... I'm 53 now and I wonder how things will be in 2 or 3 years - this all gets terribly redundant. I don't think I will like or tolerate a wig. It gets hot here, we don't have A/C, and I look ridiculous in headbands. 

So I'm still pretty "frozen" in my half-assed so-called treatment plan of FFA. I did go ahead and spontaneously swallow a Doxycyline this morning, and guess what?! My FFA is GONE now!! I swear I had to trim my sideburns down with a weed-whacker. Take that Dr. Donovan! 

As per usual it's not a good idea for me to start writing about my FFA after about 8PM GMT +2. I can't hold a coherent thought. Thoughts are down the drain with my hair, and like my scalp swollen and torpid. 

Thank you for staying with me up till here. Have a good rest of Thursday. 

Comment by illustr8r on October 3, 2019 at 1:36pm

@Minter If you use OcuSoft Lid Scrub Plus you don’t have to rinse afterwards. I bought OcuSoft Platinum too which is for the shower. It’s an already bubbly solution that you wipe across your lids and also don’t have to rinse after. So, I do that in the morning and the wipes at night.

Im happy to hear your eyes are doing better! :)

Comment by Minter on October 3, 2019 at 9:10am

Just wanted to mention that I tarted using the occusoft wipes the other day & I definitely can notice a difference, my eyes don't feel itchy and irritated and just weird anymore so that is a very good plus indeed, but the one annoying thing is having to rinse after using the wipes! Anyway, will be going for my annual eye check up in the next month or so and will mention all this to the eye doctor so he is aware.

Comment by Jayne on September 29, 2019 at 8:25am

Hi Pif

Yes I did have red circles round each strand of hair for a long time. I've taken anti biotcs, hydroxychloroquine, had steroid injections, had all silver fillings removed ( as I've previously had oral lichen planus). If my scalp gets a bit itchy i still use elidel cream but I don't need to use it often.

I have a feeling that there are different triggers ending in the same condition. I firmly believe sunscreen was mine. 

Comment by Jayne on September 29, 2019 at 8:15am

Hi Miss Mymble

The test was done by the hospital and they tested for all sorts of things but you could also take some of your own products in with you.

Thanks for your information re the products that you use. I will certainly look into them.

I decided to try and make my hair as strong and healthy as possible to try and maintain what I have left ( luckily with quite a bit of styling I 'm still ok). I take biotin tablets, use rosemary oil three or four times a week on my hair( this is supposed to be a natural minoxidil which works after 6 months use) and use olaplaex hair system which seems to make my hair thicker and stronger.

This is a horrible condition- some days I I feel ok with it as really I've been very lucky but then other days when its windy  or damp when I just hate it.

Comment by Miss Mymble on September 29, 2019 at 7:34am

Jayne, thanks so much for the info and tip to get an allergy test. I wonder if other ladies here have had a similar experience?! However, I’m so thrilled for you. To have found something that actually seems to work. Wow. Do you know if it was a standard test you got or did they test for specific things due to the things you use (like lotion, foundation etc)? Sorry if it’s a stupid question. I’m not sure how these tests are performed. 

I use the brand Green People as well. Didn’t know  the  info about Titanium Dioxide.  If you want to avoid TD altogether I believe you can, if you just use their Neutral Line (I use that) - I doubt they have sunscreen in that line, so very cool with your info. 

For the the last year or so I have changed all my products. Use Green People for facial, shampoo and deo. For makeup I use a Danish brand called Miild. A lot of their products don’t contain TD (I have a list of their products and which ones don’t contain it, if anyone is interested). All their products have gotten  the Nordic Swan Ecolabel and they are allergy certified. So maybe it’s worth to check out. 

 I still have loss in the front, but hardly any inflammation (that I can feel..). My hair breaks and then falls off after a while. So sad. Scarfs and headbands are my trusted friends these years.. or hmm not sure if I’ll call them friends as I’m frankly quite sick of having to wear them every.single.day. But they do their job and I try make it stylish and go for the bohemian look or laid back “yoga look”.

So far  I haven’t developed the white shiny band some people are talking about. I still get velus hair (to my deems surprise). And I still haven’t lost my sides. I don’t know if it’s a sign that switching to these products have helped or if it’s just my individually “take” on this disease. Which is another frustration. That we just don’t know if all our efforts are even worth it.. hm. But to me it at least feels good to know I’m actually trying and it also feels good to know I’m trying to eliminate as many bad chemicals as possible. 

Thank you you all for being here. ❤️

Comment by Plf on September 29, 2019 at 7:28am

Hi Jayne, . thanks for your input, fantastic you have some improvement, it is so good to hear a positive story on this site. I have one query, did you have redness around the hair follicles when you had the loss..??

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