Replies to This Discussion

Permalink Reply by MJ on June 14, 2014 at 9:08am

Jen,
I was wondering about this as well. At my first appointment in January, I was told not to color the front section, but if need be, do a few highlights since that does not touch the scalp. Right around the time I was diagnosed, before my biopsy, I had my hair colored. That was the first and only tine I had folliculitis and I believe the greatest amount of loss. Then, when I went to my follow up appointment in May, I got the impression that there is some question about the peroxide in both hair color and highlights. So I am letting my hair go natural. I was hoping to hear if others had been cautioned by their doctors as well. MJ

Permalink Reply by PamW San Diego, CA, USA on June 14, 2014 at 11:12am

Both dermatologists that I have visited said coloring is ok because the damage we are experiencing is deep in the follicle.

Permalink Reply by Anne Louise on June 14, 2014 at 11:31am

Dr. Lynne Goldberg in Boston echoed what Pam said. The disease is so deep below the scalp that coloring or shampoo choice won't make in impact on its progression. I continue to color my hair and I do notice the follicles more those first few days because the brown pigment seems to get in there a bit, but otherwise I haven't had any problems.

Permalink Reply by Jen S. on June 14, 2014 at 12:03pm

Thank you Anne Louise.  I was anxious about it -- one of those situation where logically you feel one way but the "hair-loss fear" takes over.

Permalink Reply by Jen S. on June 14, 2014 at 12:02pm

Thank you for the information, Pam!!!!

Permalink Reply by MJ on June 17, 2014 at 9:59pm

This makes me wonder if what we use topically does not effect deep into the follicle, what is the reason for topical clobetesol? Since I do not have any scalp symptoms or inflammation, I assumed that the topical steroid was prescribed anyway because it was stopping inflammation down in the follicle.

Permalink Reply by sallylwess on June 17, 2014 at 11:14pm

This is a great question.  I was thinking along those same lines.  My doctor prescribed clobetesol and I used it faithfully for about six weeks.  Then, when I had a flare-up of itchy scalp, I called him and went in to see him.  He then gave me steroid shots in the scalp because they get down to the hair follicles.  He said the topical treatments don't get to the actual follicle.  He said I could stop using clobetesol unless I felt it helped the itching.  I have had a bit more loss since the shots several weeks ago. My scalp is not itching quite so much.  I also just started using tea tree oil.  

Permalink Reply by Annie on June 18, 2014 at 11:03am

I am a big believer that topical steroids do help with the inflammation.  My doctor prescribed Clobetesol as well as plaquenil in June, 2013.    I complained to my doctor that Clobetesol made my scalp extremely tender when I returned three months later for a checkup.  He was pleased with my progress, and said I could stop using it and continue taking the plaquenil.  I had an extremely painful flareup about a month later and was prescribed a different topical, betamethasone, which is oilier and a little less irritating.  Progress has been slow since the flareup, but I continue to see improvement.   

Permalink Reply by Kathy on June 14, 2014 at 12:53pm

I have been coloring my hair since I was in my 20's.  First for fun - now to cover the gray.  My dermatologist also said it was okay to color.  The one thing I have done is switch products.  For home color I now use Olia (by Garnier) which is oil based rather than ammonia.  Whether it matters or not, it just feels like a healthier choice.

Permalink Reply by sallylwess on June 17, 2014 at 1:52pm

I have not colored my hair for years because I loved the silver color my hair had become.  However, since FFA struck, the color of my hair has changed to a color I do not like.  I think coloring, or highlighting, might give the hair I have left some body.  I concur with the thought process that the damage is done deep below the scalp.  We just notice the flare-ups on the scalp.  For this reason, I believe applying hair color would be safe.  I also am thinking of coloring my hair to see if it helps to hide the problem areas.  

Permalink Reply by Mareea on June 25, 2014 at 9:28pm

Both my trychologist and hairdresser have told me it will not make any difference if I continue to colour my hair. My hairdresser uses a fine oil on the roots before applying the chemicals. This seems to work as I have continued to colour for the last 5 years since the alopecia started. I will be revisiting a dermatologist in a week or so and I shall recheck with her and report. Hope this helps. Mareea 

Permalink Reply by Jen S. on June 26, 2014 at 6:52am

Thank you Mareea!  That would be great!  5 years of this!  You are a strong woman Mareea.  It's only been 4 months since my "official" diagnosis and I am already over having this monkey on my back :-)