Frontal Fibrosing Alopecia

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Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

Location: Dubai UAE
Members: 257
Latest Activity: Jul 22

Discussion Forum

FFA itching

Started by Mildred. Last reply by Chris Jul 22. 7 Replies

I have had severe itching with my FFA, including in places where I don't have hair any more and places where I never had hair.  Is the itching all related to FFA or LLP?  I understand that in hair zones this means there is inflammation. Does anyone…Continue

So much hair loss from Rogaine!

Started by Rachel218. Last reply by Annie Jul 15. 20 Replies

Hi all, I started using Rogaine a little over a month ago. At first I was using the 2.5% liquid however I was having major dandruff with that so I switched to the 5% foam and the dandruff is better but my hair loss has tripled and I'm really worried…Continue

Acupuncture

Started by Dragon&Fox. Last reply by Dragon&Fox Jul 14. 4 Replies

I thought I'd post this comment I made in another thread. I was recently assigned a different Acupuncturist since the other left the practice and WOW!!  2 weeks after this new guy's treatment, the inflammation started to go away!!  I went to my…Continue

Please help me understand :(

Started by LittleSadEyes. Last reply by Dragon&Fox Jul 14. 6 Replies

Hi LadiesSo I first noticed my hair loss last June and since then i has lost 80% if my hair, lashes and eyebrows also badly effected. I searched for so long to find answers - not my thyroid, not anaemia, not coeliac...I had a derm tell me twice that…Continue

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Comment by April on July 22, 2015 at 8:57pm
I thought this post and all of the comments were really uplifting : ) https://www.facebook.com/humansofnewyork/posts/1032604000147033:0
Comment by Mike'sDeb on July 22, 2015 at 9:17am
I had an itchy front half of my scalp and red bumps in the front of my hairline(which I thought were from sweating while exercising). This was all before I noticed any hair loss. The hairloss itself was gradual and due to my hairstyle I did not notice it for a while. I actually thought the itching was from hair products. It has been a year now since my diagnosis and these issues stopped around the same time. My initial reason to see the dermatologist was to ask if there was something I could do for my thinning eyebrows. Dermatologist also measured my hairloss with pictures at each visit and so no change over the past year.
Comment by sadandunsure on July 21, 2015 at 11:59pm
What are you guys using to measure inflammation? My biopsy was taken a little further back than where my hairloss is at and said there was inflammation (also early androgenic alopecia) but my scalp wasn't red, itchy, sore, nor did I have bumps...I have none of those symptoms, but there is still inflammation under the skin (although there are a lot of articles saying inflammation is found iN AGA so maybe that's what it's related to). In any case, when You guys say inflammation, do you actuaLly have little bumps or something? Or tenderness/itching?
Comment by Mike'sDeb on July 21, 2015 at 6:41pm
Thank you both! By clean eating I mean no refined processed food. The nutritionist told me the majority of what you eat should either grow from the ground or have a mother. I occasionally indulge in my weakness for pizza but otherwise steer clear of breads, pastas etc. I found the more good things I ate and the better I felt the less I craved the "bad" stuff. I drink a lot of water and stay away from sugar and the unhealthy fats as well. I do have olive oil, avocados and other healthy fats. I eat pretty much the Mediterranean type diet. I walk 3-6 miles most days and I do a yoga class and a cardio class each once a week. It's all been positive changes and it seems to be working and I feel good about living a healthier lifestyle. As far as weight, I have always watched but I probably am at at the lower end of my range which is another positive thing! I don't feel hungry or deprived (I allow the occasional indulgence when it's worth it) so it's hard not to think these changes have been beneficial in the halting of FFA.
Comment by NatalieW on July 21, 2015 at 6:04pm

Mike'sDeb - that is wonderful news! and certainly gives us some hope that eating can affect this condition. I certainly notice that gluten affects the level of inflammation I have in the active area. Good luck and I sincerely hope that the "burn out" is permanent for you

Comment by Sad in chicago on July 21, 2015 at 5:32pm

Mike'sDeb:  What are you considering clean eating?  No carbs at all, or just no refined, processed foods.  Have you lost weight?  Do you exercise?  Thanks.

Comment by LittleSadEyes on July 21, 2015 at 8:39am
My recession has sped up hugely recently. My widows peak is going.eyebrows sparser by the day. Scalp embarrassingly visible. I don't understand why its sped up like this. If I look really really close under light there are the tiniest smallest baby vellus hairs on the recession kind of like you get all over your body but dont notice. I'm not really coping.
Comment by Mike'sDeb on July 16, 2015 at 10:55pm
*that should say derm visit update :)
Comment by Mike'sDeb on July 16, 2015 at 10:34pm
Hi All...just wanted to give seem visit update. This has been 6 months since my last visit and 1 year since my diagnosis. At my initial diagnosis it was felt my condition began >1 yr prior and the worst was over. I did have a small area of inflammation and I used clobetasol for several weeks. The usual FFA drugs were presented as options but since I had started a clean eating diet 6 months prior (for IBS) I wanted to wait it out. Side effects of those drugs are frightening. At my next appt 6 months later she felt I was close to "burn-out". She suggested Rogaine which I tried for a while but it became a chore to have to keep using it and it wasn't going to regrow the hair I lost anyway. I do use it on my eyebrows and it has helped. I use cerafill shampoo/conditioner and dense thickening spray from Redken (for hair loss)...gives me nice full hair. At my appt today she told me there is no further hair loss or areas of inflammation. She told me I have a beautiful head of hair with an unfortunate condition. She also said she believes the condition is environmental and the fact I started clean eating and the disease stopped does not seem to be a coincidence. Obviously this can't be guaranteed because so little is known about FFA. She has not seen the disease fire back up after having no activity this long. I am excited about this because it has reinforced that the best gift you can give yourself is live a healthy lifestyle. I see her again in 6 months and I hope for the same report. I will continue my plan because it has worked for me in many ways...lots of other physical and mental benefits as well. I also have a great hairstylist who has been able to conceal the hair loss (about an inch from ear to ear and a little more at the left temple). Never lose hope ladies and always try to make decisions in your best health!
Comment by KarenGinny - Iowa, US on July 16, 2015 at 5:33pm
My first derm I had tried several rounds of the cortisone shots, and prescribed some shampoo, but after the biopsy showed FFA he told me there wasn't anything else I could do. I felt defeated and never went back to him again. A year later I went to another dermatologist and he at least was willing to try to help me. We tried plaquenil but I got an awful rash from it and now I'm on Methotrexate to try to decrease the inflammation. I know my hairloss is not going to change but hopefully not get any worse. I just try to hide it as best I can.
 

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