Newly diagnosed with FFA

Have any of you with FFA done any kind of blood panels looking for potential sensitivity to chemicals, food additives, food, etc. it looks for antigens in your blood that react to any of the above mentioned allergens. It’s a pretty extensive array of tests and is expensive, not covered by insurance. But considering this is auto-immune disorder that attacks your hair follicles, something has to be triggering this. I’ve read studies that sunscreen, Botox are a couple suspects. If any of you have any experience with any of this I would be interested. I’m just beginning with this terrible diagnosis. I’m having a pretty hard time with it. I don’t want to take any of the medication that is typically used, but I don’t want to lose Amy more of my hair. Any thoughts would be helpful. Thank you.

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Comment by yousey on November 24, 2017 at 3:20pm

Hair loss can be seen as an autoimmune disorder to some, in my opinion hair loss whatever form does cary an inflammatory factor to it. I never thought to do an array looking for antigens my immune system reacts to but that seems like a logically sound thing to do. I honestly don't know what FFA stands for but im assuming its some form of alopecia that is more autoimmune than 'just comes with age' hair loss. If that is the case then yes definitely try it, i feel your concerns with how much it is, loosing hair is an expensive business and it honestly sucks. If doing the array is very expensive then maybe just take the medication that is proven to work but if not then try to look for a particular antigen that is causing the inflammation in your body. The way i look at conditions like FFA is that this was in your genome your entire life but something triggered the gene to become unmethylated and 'activated' recently. Who knows, it could be old age, the diet coke you might drink, or even menopause that triggered it. doing the array could help figure out if that trigger is an environmental one that you yourself can control, it could give you nothing too, these are things to consider before going into an array that is very expensive. In my opinion just take the medicine they tell you to. I know it lowers your immune system probably but just give it a shot and see what happens, that should be your first line of defense and then and only then should you look to other options like an array, just my opinion tho.

Comment by AnnieMay on November 24, 2017 at 9:24pm

Hi Pat- I'm sorry for your diagnosis. I will tell you that you should join the frontal fibrosing alopecia group. Go to groups and then look for that group and join. A very supportive group of people dealing with this disease and lots of information. You can go back and look at the posts.  

Comment by Mary on November 26, 2017 at 5:20pm

I think my FFA was triggered by immunotherapy which I had for cancer.   It makes sense to me that if the immune system is highly stimulated, then autoimmune things would happen.  The immunotherapy I had for cancer also had an inflammatory response as a side effect.  

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