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Comment by Annie on January 24, 2014 at 4:26pm

C, I've been using Rogaine on my eyebrows since my diagnosis 10 months ago, and they are yet to be affected by ffa.  My doctor said he thinks the Rogaine keeps the surrounding hairs poking through and makes it more difficult for the follicles to scar over. 

Comment by MJ on January 24, 2014 at 3:28pm

It is good to hear all the different perspectives and approaches. I hope we will continue to hear from those who may have reached the point of burnout...would be good to know there is a light at the end of the tunnel! I definitely agree that a healthy lifestyle can make a big difference. I am following an anti inflammatory diet and staying active. In doing so, i feel so much healthier in mind and body and that helps with coping with ffa. MJ

Comment by ElleMN, USA on January 24, 2014 at 2:48pm

I hear the frustration with the meds and I just wanted to share my experience since stopping all the meds last March. I'm finally to the point where I'm not getting handfuls of hair dropping daily; this probably stopped last October.

Things I do:
1. wash my hair with tea tree oil shampoo with no conditioner (I thought this would be problematic but it's fine--snarls are still easy to get out). I also use Dr. Bonner's tea tree oil soap for my body.
2. I take fish oil with vitamin D every day
3. I'm getting 9-10 hours of sleep each night. This is a huge change from being woken up numerous times each night by my now 6-year old.
4. We got a puppy in October so I'm getting much more walking and outside time (exercise+vitamin D)

My scalp is much healthier; I don't get so flaky or itchy. I'm not sure what specifically is working or if maybe the FFA is burning out. Just thought I'd share.

Comment by Maddy, California, U.S. on January 24, 2014 at 2:09pm

MJ - I use Latisse on my eyebrows. I started using it almost immediately (probably 4 years ago) when I noticed they were getting thinner and, so far, I still have decent eyebrows. I use the Rogaine on my hairline at night only. I wash my hair every other day, but sometimes I will just wash the front (bangs) in the sink on the off days if I feel the Rogaine made my hair look greasy overnight. This seems to work for me, but I'm sure everyone is different. 

Comment by Celia on January 24, 2014 at 1:56pm

Annie - your comments and other recent ones from many of you would indicate that the meds, any combinations do not appear to have positive, across the board results.  Yet your feeling is that pain/redness is improved and you attribute those improvements to the use of meds.

MJ - using a q tip and applying rogaine to the eyebrows - I would suggest is probably a waste of time.  This disease appears to affect the eyebrows most noticeably first.  Then I seems to continue the attack into the hairline.

My feeling is that we should all continue to adopt a healthy lifestyle embracing a good diet regime, cutting down on sugary foods, exercising daily to raise the heart rate as much as possible depending on individual fitness levels.

I am soon to see a new dermatologist locally.  I am certain that the prognosis will be the same as in the past, and the treatment options will not be any different to those suggested before. Best wishes to all.

Comment by Rita - Canada on January 24, 2014 at 1:42pm

Alice,  Selsum blue claims it's for Itchy Dry Scalp w/ 6 moisturizers and conditioners.  I have the same fine and flyaway hair and very dry but then I color it- don't want to be grey.  What a challenge.

Comment by Annie on January 24, 2014 at 1:35pm

MJ, I use the Rogaine foam in the mornings and my Betamethasone topical steroid in the evenings.  I wash my hair every other day and apply the foam to my scalp after shampooing and before drying my hair.  The mornings I don't wash my hair I apply it before styling my hair.  It seems to me that the foam makes my hair more flyaway and dull than usual.  I've been thinking about trying the liquid.

I have also been dealing with acne since I've started using the topical steroids.  I'm on my third topical, and all three have caused breakouts.  My doctor prescribed Amoxicillin antibiotic last week to hopefully clear up the acne.  I don't know which is worse, the breakouts or the hair loss.  Who knows, perhaps the pimples distract from my thinning bangs.  I have to admit that I wonder if I shouldn't buy a nice wig, have clear skin, and and give up on trying to save my hair.  The pain & redness is much improved with the medications, but I continue to lose hair after ten months of various treatments. 

Comment by Alice on January 24, 2014 at 1:08pm

Rita, I found that tea tree oil shampoo and conditioner helped the itching and irritation, but it was too drying to use all the time. Others have suggested Headand Shoulders classic formula but I haven't tried it because I thought it might be drykng . My hair is very fine and flyaway, so doesn't need drying out.

Comment by Alice on January 24, 2014 at 1:02pm

I've only tried 2 applications of the 2% minoxidil liquid, using the dropper thar came in the package. Both times, it dripped down my face, despite holding my head to the side. I really don't want to grow a beard. What's the best way to use this stuff?

Comment by Rita - Canada on January 24, 2014 at 12:55pm

Has anyone used a shampoo for itchy dry scalp such as Selsun blue or others with any success?  I know it's not intended for our FFA issues but thinking of trying it to stop the itching since I have put a hold on the clobetasol with its acne producing issues.

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