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Permalink Reply by Hazel on January 26, 2020 at 10:23am

I am currently on a course of Excimer laser for FFA. I also take Plaquenil and a host of other homeopathic attempts to halt the inflammation.  I have seen success with stopping the inflammation with the excimer laser treatments.  Unfortunately, this is quite expensive and not covered by insurance.

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Permalink Reply by Sha on January 28, 2020 at 1:45pm

Hazel, that is great! Thank you so much for sharing. Has it helped with any new hair growth? My insurance will not pay for it either. I didn't even ask what it would cost if I paid on my own. Do you mind if I ask what you are paying out of pocket for it? Also, with the research I did, I didn't see where you could buy a small hand held or similar for your home. I've seen hats, such as Capillus but I don't think it is the same thing as an Excimer laser or not. I need to ask my Dr more about this.

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Permalink Reply by Hazel on January 28, 2020 at 5:04pm

I am treating with the laser twice weekly @$200 each time so it is what I consider to be very expensive.  Additionally, I take plaquenil. The short answer is that it stopped the inflammation I was experiencing and the nurses performing the laser say I have baby hairs filling in.  It is hard to say whether this is laser results or plaquenil or normal calming down of the disease and hair growth. For me, it was worth it to rid myself of the itch and I can physically see the follicles are smaller and not enlarged at the base. Additionally, I am not seeing the keratin plugs either.

It has been quite a challenge from the beginning on, I have had steroid injections, used topical asteroid, taken Finasteride, then switched to Cellcept. Several doctors later, I ran into a study indicating the Cellcept does not work. I experienced a major "flare" so I switched doctors and began my own study and research.  International Journal of Women's Dermatology 5 (2019) 116-123. You can find it online has some great info on the science behind FFA. 

One article in particular led me to Excimer and it is from Original Research  Frontal Fibrosing Alopecia Demographics: A Survey of 29 Patients by May Zhang, MD; Lily Zhang, MD, Ilana S. Rosman, MD; and Caroline M. Mann, MD. I found this on www.mdedge.com/dermatology. This most recent study cited 3 cases of laser, which isn't many, that had 100% effective treatment with the Excimer so that is why I tried it.  Laser does not seem to be something that the doctors are recommending but mine was willing to give it a try.

I hope you can find something to help you.  In the mean time, I have also tried every vitamin known to man, have cut out gluten and as much sugar as I can, to try to eliminate inflammation and be as healthy as I possibly can from the inside out.  I think it helps and it has aided in helping the low level Hashimotos I also have as well.

I do wonder if the Capillus would work myself as it seems to be similar technology, I am just not sure that the low level light of Capillus would go as deep as excimer laser.  After all, FFA begins at the roots of the hair follicle as an inflammation. By the end of my treatments I could have purchased the cap:-).

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