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Comment by Alice on February 12, 2013 at 8:14am

Aimee - In addition to using the tea tree oil shampoo & conditioner, I apply pharmaceutical grade tea tree oil directly to my scalp, w/out diluting it. There may be a more effective method, but I put my finger over the opening and tip the bottle over. Then, I start at the hairline and kind of "scratch" the oil back w/ my fingertips. It's a very thin oil (and my hair is pretty fine), so seems to spread easily. It smells strong at first but dissipates quickly. Unlike the clobetasol I was using, I don't have to worry about the tree oil dripping. I wouldn't want to get it in my eyes, though.

Comment by AC from CA, USA on February 11, 2013 at 11:56pm

Hi Pam-- Thanks for the reply. I am in Sacramento. I will definitely lobby for Plaquenil, though my derm wants to wait for the biopsy results. That said, I'm not really willing to wait 3-4 weeks without getting treatment. Thanks again to all for the sharing of experiences.

Comment by Robyn, Melb. Australia on February 11, 2013 at 9:20pm

Hi ladies,
Just catching up on all the information as I haven't been on the site since Friday. Simone I don't believe I have had any side effects from the Plaquenil and I have been on it for almost 2 years now. I am getting my eyes checked every year (no sign of any retina damage at this stage) and will continue to monitor that as I don't want to create a more serious problem! At 59yrs old I try to keep fit and healthy with moderate exercise and a good diet and in the past 2 yrs I have kept my weight the lowest I have been since my 20's. I am wondering whether the Plaquenil has something to do with that as when I first went on it I read some feedback that suggested people tended to lose weight. I also mentioned previously that I no longer get heyfever having had it all my life - also wondering if Plaquenil would be affecting that (which is a good thing). I believe my FFA is slow moving (possibly due to Plaquenil) and I have never had signs of itching, redness etc that a lot of you are talking about, which is some consolation. My specialist checks carefully for those signs when I see her which is at the moment every 6 months. While the photos of my hairline she has taken certainly show a difference to 2 yrs ago it has only moved about 2cm in total with a bit of thinning at the sides. My eyebrows may have thinned a bit, but I still get them plucked so I don't really notice that.
Sandy in regard to hair style I am still colouring my hair (look way older than 59yrs if I let it go grey - and the hair loss is bad enough!) however I only use a semi-permanent which is probably a bit gentler than a permanent colour. I have very curly hair however I prefer to have a straight fringe (I think you ladies call that bangs?) with curls behind - short hair and I'm gradually taking it shorter. The fringe covers the receding to a degree, but I'm not sure how much longer I will get away with that! Curly all over is a bit old-fashioned looking so I'm keeping with the straight fringe for the time being. Of course always having had curly hair - I have always wanted straight hair! Maybe a wig won't be so bad after all - I won't have to use a straightener!
Hi Aimee, I think we all understand what you are going through and I hope you find everyone's support helpful, I certainly have.
Love reading all this, thanks everyone. Robyn

Comment by PamW San Diego, CA, USA on February 11, 2013 at 8:14pm

I want to address my comments to AC. Where in CA are you. Judy, Lacy and I are from the San Diego area. I felt your pain in your comments. We are all there with you. Some of us are now on Plaquenil, which for most of us has calmed our symptoms. this drug can take 3 to 6 months to begin working, but there are other drugs that you can get to help you bridge until Plaquenil begins to work.

Zyrtec helps during the day with itching and Benadryl at night. Also, Doxycycline is an antibiotic with ant inflammatory properties that can help calm the redness. I took it for 3 months until the Plaquenil I kicked in. Go to your doctor and insist on treatment. Tell them you might have scarring alopecia and every day counts!

Robyn I have been on Plaquenil sine the beginning of August and I am ok.

Stacey, some members have tried minoxidil but I am not sure if anyone can really tell you if it works.

Good luck to all of you.

Comment by Simone NJ USA on February 11, 2013 at 6:26pm

Hi Robyn:

I just read your comment that you have been on Planquenil. Have you had any side effects as get and is your FFA still seems to be slowing since your last comment in Jan?

Comment by Alice on February 11, 2013 at 5:06pm

Ellen, I've been using Nature's Gate Tea Tree Oil Shampoo & Conditioner and find it to be very soothing. I also use straight tea tree oil on my scalp to help w/ the itching. I agree that gentler is better.

Comment by Alice on February 11, 2013 at 5:01pm

Comment by AC from CA, USA on February 11, 2013 at 4:57pm

Continued....

Since getting the formal diagnosis last week, I’ve used my old Elidel prescription for my skin & been trying that on my hairline, forehead & eyebrows. It’s too soon to know if it helps, but it certainly isn’t having the same skin calming effects it did for me years ago.

I been on a low carb, gluten free diet for 3-4 weeks & have lost about 8 lbs. I began taking natural dessicated thyroid to boost my thyroid hormone levels. This weekend, I also started a suite of herbs that are supposed to provide benefits against skin inflammations. Lastly, I bought some bimatoprost (Careprost) & I am trying that for my eyebrows & eyelashes.

I appreciate the sorority of advice & experience here on this forum. I don’t think anyone can understand the psychology of this condition without experiencing it. In fact, when I think about it, my intellect says, “good grief, woman, this is not the end of the world!” but then I see the bald patches & the skin that looks awful & aged & the whole picture looks to me like someone who is ill—& it just brings up an insane amount of panic & stress. Doing all I can to balance myself here at the brink of panic, sadness, & loss.

Alice—you seem to have the itchiness/pain that I am experiencing & you mentioned tea tree oil use on your scalp—do you dilute it to apply it?

Others—what about those Kingsley hair drops? Has anyone found them useful?

Appreciation,
Aimee

Comment by AC from CA, USA on February 11, 2013 at 4:56pm

Hello Ladies--I’m new from CA. I‘m 45, mixed ethnicity, & perimenopausal. I’ve had skin related problems since the onslaught of hormonal changes began in my late 30s. My symptoms began as intense PMS that turned into extreme inflammation of my facial skin which would swell angrily, very hot & red, & thick. It was extremely dry & extremely itchy & it burned at times to have anything on my face except water. Initially—in my late 30s—I was diagnosed with rosacea, then dermatitis & I was prescribed Elidel cream-- which was very effective at ending the problem then. I thought of these episodes as my body’s custom version of hot flashes.

Fast forward a couple of years & I noticed my hair changing—thinning & a different curl pattern. I noticed that some of my eyebrow hair started sticking straight up. I chocked all of this up to hormonal changes. Then my eyebrows started thinning until there was a large missing patch on one side. I also noticed generally thinning hair, but again thought it was just aging. I thought I may be hypothyroid based on this. By last summer, it was clear that my eyebrows are balding & the hair isn’t growing back. Since last Fall, I’ve realized my eyelashes are thinning & all the fine hair on my front hairline is gone; my hairline has receded up to 1.5 inches from ear to ear & the bald skin left behind is weird. Recently, the facial skin inflammation/burning/itchiness is back with a vengeance but it is limited to my forehead & hairline this time—not my entire face. My neck skin is also affected, but in the way that it is papery thin & overstretched looking, not thick, scaly & leatherized as on my forehead/hairline.

After getting nowhere with my docs, I scoured the internet & began to suspect FFA. I begged for dermatologist referrals, who confirmed this diagnosis last week. Biopsy forthcoming to help guide treatment. My dermatologist says he will refer me to regional hair specialist for consultation after the biopsy, which is at least something here to look forward to, I guess. I am devastated that this is irreversible & that I am helpless. After stressing about this problem last week, I literally woke up this weekend to find that the skin on my forehead had gone ablaze with inflammation & had formed thick, scaly, dry, reptilean layers overnight. It itches as if ants are crawling on my skin & it burns, so that even if I am not looking at the wastel& where my hair was, I can feel it there all the time.

I believe there is both a stress & hormone trigger that has brought this entire condition on for me, possibly thyroid related as well, though my blood tests results have all come in within the large “normal” range that doesn’t necessarily account for what my normal is. However, my free thyroid was at the bottom of the normal range.

I am not one who has been overly invested in my looks, though I am/was naturally attractive. I’ve never worn much makeup or invested in the art of manufactured female beauty as I prefer a more earthy presence. I find myself feeling ashamed, depressed & very stressed over this thing I can’t control. And, I feel stressed that I am feeling such stress when it is certainly the thing I least need. Yet, it is impossible to not panic when being jarred by reality when looking into the mirror & seeing no eyebrows & the marching forth of baldness. (continued)

Comment by Stacey on February 11, 2013 at 4:40pm

Hi I've just joined and its great to read all your comments. I am currently losing hair at the front and my temples, but I am undiagnosed. My docs and derm dont seem to interested. My scalp is very ichy at times and I have the odd very small red mark which could be a folicle scar? Its where the hair seems to be vanishing from. I've been using bettamouse and nizoral which is helping a little with the itch/burn sensation. I am hoping to get a second opinion and biopsy done so I know what I've got. I dont know whether to start on minoxidil or not, but trying to hold out for a definate answer.

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