Alopecia World
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Newly diagnosed in Colorado
Hello. I've been reading this discussion board for a week, since I was diagnosed with FFA on Feb. 12th. I'm 54 years old and lost my eyebrows probably 3 years ago which, at the time, I attributed to a side effect of 5 years on Tomoxifen. I've adjusted to that and don't care much about my eyebrows now. However, I noticed a few weeks ago that my hairline had started to recede and I already had a skin screening appointment scheduled with a dermatologist. The minute he pulled my hair back he could see the hair loss. I mentioned my eyebrow loss, he looked closer and said my pattern was classic frontal fibrosing alopecia. He told me a bit about it and recommended I go do some research on it. He said the hair loss I've already suffered is irreversible, there are some treatments that work for some people, including some medications used to treat prostate conditions, but there is no known cure. I asked if it would get worse, and he said it likely could. Lovely. He told me to contact him, if I decided I wanted to "try" something.
I've been doing lots of online research and have read what I can in old posts here. Since I had very early stage breast cancer and a family history of the same, I am not interested in hormone therapies. I've read FFA is an auto-immune condition, but I've also read that the hair follicle becomes inflamed, dies and the scar tissue prevents regrowth.
Here are my questions for you all:
1) Has anyone had any good results changing to an anti-inflammatory diet (like Dr. Andrew Weil's)?
2) Has anyone had any good results with acupuncture?
3) Has anyone had any good results with a course of steroids followed by tetracycline antibiotics?
4) Has anyone tried Serrapeptase - an enzyme which is supposed to dissolve "hard" tissues, like scar tissue? If so, any positive effect?
I've read that many people have inflammation basically out of control in their bodies, so my mind is wondering "is inflammation the culprit here?" and will reducing it help?
Thanks in advance for sharing your knowledge and any experiences that might be helpful with the above.
K
Replies to This Discussion
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Permalink Reply by Robin on
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So SJC does your Dr find it surprising that you have hair growth since this is supposed to be scarring type alopecia? My understanding is that it never grows back. I am going to continue the AIP with a few additions back if they work (eggs, a few spices, a glass of wine?). I hope that this is helping my scalp and maybe one day I will heal. I am very glad to find others who are interested in AIP. Hope we all can stay connected to share progress or no progress...I am curious about the stool test so we will see.
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Permalink Reply by SJC on
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Hi Robin,
Honestly, I don't have another appointment with her for a few months so she doesn't know of my progress. I will probably see her just before or during the upcoming CARF conference in New Orleans since she is the conference chair this year. When we did my biopsy, the results showed areas of scarring mixed with follicles that were still viable in the sample. I'm sure the regrowth is only from the unscarred areas. I don't expect to regain any hair in the scarred areas unfortunately. I have a good inch and a half to two inches around my face that has receded; hope it remains unchanged until I burn out. -
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I have a question of "burn out"....how or when does this happen? I don't know much about this. Is it different for everyone? How long do most people have an active FFA? Would like a rapid burn out!!!!
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SJC, one other thing we have in common is transplant. I have a daughter who has had a lung transplant so I too am very aware of celcept and other immuno suppressants. I don't think it is worth loosing my hair to gain a serious infection or kidney damage or what ever else......hoping to find a natural healing.....also hoping the finasteride will at least slow the process.
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HiRobin, Did you have the super shed when you started Finastride or was that before? Are you having alot of regrowth or just a hair or two popping up? Ive been on finastride and plaqunil for two months. Ive done the steriod shots 3 times but Im wondering if it only aggravates it more.Thanks for your info.
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Hi, I had lost above my ears and around the top forehead when I was diagnosed in October last year. I have been on finasteride since then and I have lost more hair. I had a recent flare and don't know why. I have not had any grow back......that would be nice......I continue to eat an AIP diet and will continue the finasteride and clobestol daily. y Dr only let me do the shots three times.......he said if it was going to work that was enough.
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Bbq,
My second and most recent super shed started right after beginning plaquenil, strangely enough. It is a side effect of the drug that isn't seen too often. Obviously it wasn't the right drug for me yet it is for many others. I have good, solid hair regrowth at my part, corners of my forehead and over one ear. Maybe some at the nape too. It is about 2 inches long and dense. I'm really pleased. For a short time I was like alfalpha from the little rascals- it stuck straight up, but no complaints from me. -
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SCJ, I think that is Great news! Thank you for replying to my question.
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I haven't had any other than 2 or 3 hairs, but its only been two months since I started the med's. I feel like I have some hope. Being on both Fin and Plaq I feel like its just got to stop it. I really hope in a couple of years I can get a transplant. My hair has gone back 1.5 inch. I dont look at peoples faces any more; I look at their hair lines. Lol :(
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