Hi I am brand new to this site. I joined because I was looking for people I can relate to. I recently found out that my doctor thinks I have Frontal Fibrosing Alopecia. I have had so many test in the past four years. That is when I started to notice my hair loss.

The first time I noticed a slight bald patch was after a hair cut appointment. I thought my hairdresser had maybe put the blow dryer on a little too hot. I did not go back to get my hair done for one whole year. The hair never grew back. I started noticing more hair loss. I had already noticed that my eyebrows started disappearing. Those were getting worse as well. I brought it up to every single one of my doctors. They all thought I had a thyroid condition.

Time went by and I noticed more and more hair loss from my eyebrows, my arms and my hair especially on the sides. The front of my hair there were a few hair follicles left and the skin started turning a whitish color. Apparently that is the scaring.

What really makes me angry is that I have been going to the same dermatologist for years. She never mentioned this condition in the past she was giving me shampoos and checking my thyroid. I had done some research and I told her on this last visit that I thought I had Frontal Fibrosing Alopecia. She looked at my hair and said yeah it looks like you have Alopecia. I was thinking really! You never mentioned it before. She took a biopsy and it came back inconclusive.

The dermatologist gave me a topical steroid cream. She wants to give me the steroid injections but I'm not sure any of that will even work.

Does anyone have any advice or suggestions?

Views: 851

Comment by Tallgirl on August 31, 2013 at 11:45pm

Go to a dermatologist who will keep up with the condition and respond to you positively. Also see www.naaf.org.

Comment by LittleRhody on September 1, 2013 at 5:31pm

Thank you. I will I kinda feel like this condition is hopeless and there is no help or cure. I guess if I knew this was the extent of it I could live with it. How much more hair am I going to lose. That is the question. Thanks for the website. I will check it out.

Comment by Sam on September 1, 2013 at 8:48pm
Hi, I actually don't think it's hopeless. I think if it's caught early that it can be stopped, that is what the 2 doctors I am seeing now are telling me (I already went threw 5 dermatologists to get to these two that I believe are experts in the field). I see you are in RI, you may want to consider coming to NYC to see Dr. Jerry Shapiro, w NYU Langhorn Center. His apts are expensive, like 800 for consult and doesn't take insurance, but you can then submit to insurance and hopefully get some back. He does lots of tests and measurements of hair. I felt it was worth it and continue to go. He can send detailed reports back to your regular dermatologist and then they can work on that plan. He said that I won't need a wig and seems convinced this will stop. He's written tons of papers on this and travels world speaking on hairloss. I figure if he is telling me it should be ok, then it can't be hopeless. Now, I may not choose to take the oral meds so it may b another story but he knows this and thinks that w shots that may be enough for me. Not sure what cream you have but there is a really strong one, clobestrol (or something like that) he says that makes veins pop out so he doesn't use it anymore. I forgot to go to pharmacy today to get the one he called in but can let you know when I get it. I ordered some eyebrow stencil kits from amazon and watched some utube videos on doing eyebrows (there were a ton) I will try those when time comes but for now using shadow to fill in. I would also suggest looking into diet changes, I am still trying to figure it all out but I think I notice a difference... Hang in there.
Comment by Tallgirl on September 2, 2013 at 12:36am

Don't be fooled. Sometimes, "cures" don't work. Insurances do not all cover this, and then you are out the money you spent on the fast-talking, know-nothing doctor. One site on alopecia says this:

Alopecia areata is categorized as an auto immune disease, and occurs when the body mistakenly treats hair follicles as foreign bodies and tries to destroy them. It appears as areas of patchy loss on the scalp, but can spread to the entire scalp (alopecia totalis) or even the entire body (alopecia universalis).

Patchy loss due to alopecia areata can often be treated, via steroid injections or a high strength minoxidil cream + azelaic acid, but when the hair loss becomes more extensive treatment is less likely to be effective. The extent of alopecia areata can wax and wane, and spontaneous remission can also occur. Because of the different extents to which alopecia areata can cause hair loss, people often wrongly assume that hair loss is due to other factors, but patchy loss all over the scalp is almost always due to this type of alopecia.

Whilst alopecia areata is caused by an auto-immune function in the body, it also seems that it can be triggered by various environmental factors. Whilst research into this is still ongoing, it would appear that everything from stress and shock to allergies, pregnancy and illness can trigger the condition.

Some people also wrongly believe that it needs to be an ongoing trigger to maintain the condition, or that alopecia areata will cease to be a problem when the likely trigger has been identified and stopped. Sadly this is not the case, as once an autoimmune disease is initiated it can be self-perpetuating. Tissue destroyed in the early stages of the disease can be broken down and the antigens presented to immune system cells in the lymph nodes. This recruits more self- reactive cells, which destroy more tissue producing more antigens, and so the cycle continues.

Comment by Sam on September 2, 2013 at 8:22am
I am not fooled. If it can't be stopped so be it but I believe I am with two docs that have lots of experience, one that has studied FFA for years, researched, knows trends, treatment options, etc. while there cannot be a cure, I think regression can be slowed and maybe stopped. I haven't loss any hairline yet, maybe if that early, it can be helped. Maybe not. That was all I was trying to convey. I hate to see anyone be completely discouraged. I say be ready for alternatives, take any approach u feel comfortable with but never give up hope. I'll keep my fingers crossed for everyone in this crappy situation.
Comment by LittleRhody on September 2, 2013 at 4:36pm

Thanks both Sam and Tallgirl I appreciate any advice. Talking to others in my situation has really been helpful. Some days are good for me and others not so much. I feel guilty even feeling bad for myself. Today I don't feel as horrible. Sam thanks for the advice about the two doctors. It is really pricy though. I don't think I could afford it right now. I wish I could. Keep me up to date with your progress though. I am curious what is working for you.

I did find a really neat way to cover up my hair loss on the sides. This morning I was drawing my eyebrows on and just thought let me use the same technique on the sides of my head. Surprisingly it worked out and looked almost like normal. I don't know why I did not think of this before. I was actually able to pull my hair back and it looked pretty nice. Even my husband was shocked. Not sure how long I will be able to pull that trick off.

Thanks again.


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