Replies to This Discussion

Permalink Reply by Christi Q. on January 10, 2017 at 10:56am

Most of us are trying anything and everything Shachar.  I live in terror every morning looking in the mirror and am desperate for answers and help.  My diagnosis is also FFA.  I have had MOUNDS of thick hair all my life.  My crowning glory, and it's now reduced to thin wispy hair.  I want to cry all the time.  My doctor has just started me on Dutesteride and Rogaine to try and keep the hair I still have left.  I hate taking drugs, but I'm desperate of course.  I have stopped using anything on my face/body that contains SPF.  There is a new study in the hair loss world regarding this possibly being a factor.  I have not changed my diet.  I am not a big meat eater, but I LOVE whole grain breads.  Don't know if this is causing a problem or not?

I hope scientists will continue to research and study to help the millions of us out there!

Good luck to you........please share anything that works for you.

Permalink Reply by Christi Q. on January 11, 2017 at 10:06am

Finasteride and Dutesteride are the two most common drugs (at least where I live) to help halt the existing hair loss. I have a co-worker on Finasteride, but Dutesteride has shown to be a bit more aggressive at fighting so my DERM put me on that. I have only been taking it for about 10 days. I'm dreading the shedding faze that the Rogaine and Dutesteride are both going to cause in a couple of weeks. Can only pray that it's not too drastic. Trying to find ways to cover thinning spots. Running out of options. Really don't want to get a wig....but, may have to:(

Permalink Reply by Airam-FFA on January 10, 2017 at 11:43am

Hi Shachar

I have just been diagnosed with FFA a few weeks ago. I am looking into the AIP - auto-immune protocol diet but not started it yet as Christmas happened along and I want to cut down gradually rather than all of a sudden. Not too keen on putting my body through any sudden shocks. I noticed hair loss about 4 years ago and put it down to stressy work conditions dealing with poor student Behaviour and management refusing to do anything about it. I thought that once I left that position my hair loss would improve!!!! So it has come as a great shock that my hair will NEVER grow back. I have lost much of my eyebrows - which were very dark and defined together with loss of and continuing loss of hair at the front and temples down to my ears.

I have ointment plus tablets - will post what they are later.

I have also been to see the Dermatologist at Guy's Hospital who is carrying out research into this crappy condition.

xox

Permalink Reply by Minter on January 10, 2017 at 3:49pm

Hi Shachar, I am sorry about the loss of your dad, that is a lot to go through.
I haven't done anything dramatic, just do my best to eat healthy and get myself to the gym, get enough sleep and take vitamins/supplements. My doctor injects me with steroids along the scalp & eyebrows every 6 weeks and I apply clobetosal twice weekly. I mainly am still doing the steroids to keep the itchy scalp down, but I think I will give that up soon and just use essential oils for the itchiness, as am pretty sure I don't want to have to keep getting steroids injected into my head for the next several years until this burns itself out! I've also been to Guy's Hospital to give a blood sample for the FFA research.

Permalink Reply by Alopecia612 on January 10, 2017 at 10:43pm

I am also 37 and I have lost almost all of my hair in the last 3 weeks. It is continuing to fall out in mama sea and I'm just having the hardest time trying to handle all of this. Let's talk, I haven't found anyone else our age yet, but like I said it's all new for me and crazy aggressive.

Permalink Reply by Alopecia612 on January 10, 2017 at 10:45pm

Mama sea??! OMG auto correct. It was supposed to say massive clumps ...

Permalink Reply by Leni on January 12, 2017 at 10:49pm

Shachar- please consider making a diet change. I've been doing the AIP diet for 3 months and the itchy scalp and the papules have diminished/decreased. Before this AIP , I was gluten free for about 5 years with some improvement. Additionally I did the l-glutamine protocol and I truly think that has allowed the diet and all the supplements I am taking to work .

I have noticeable regrowth on my scalp and some on my eyebrows. I'm close to giving up hope on eyebrows at this point. Assuming the scarring must not be allowing the hair to regrow T this point. Wish I had had this diagnosisis 6-7 years ago when this all started with my eyebrows.

In addition to the above mentioned treatments I take the following: magnesium glutamate, Viviscal, Vitamin E, fish oil, probiotic, evening Primrose Oil, Vitamin D, Vitamin C. I also drink lots of nettle tea and horsetail tea. I am trying to add Tumeric into my diet more and I recently started taking Quercitin.

As for hair products I use Organix caffeine & niacin products and Nizoralon affected areas. I also use minoxidil 2x a day and clobetsol on and off for two weeks. Only scrip I'm taking is Minicycline.

I have had periodic cheats and I have definitely identified some problematic foods.

There so many more things to try (meditation, acupuncture, more supplements) but this all costs more money and I'm finding this journey to be quite expensive.

My husband has agreed for me to get my eyebrows done for my 50th birthday this year. I'm sooo excited.!!!

Stay positive as much as possible . This is such s scary and traumatic condition. I never knew I would feel as desperate as I've felt since getting diagnosed. Makes me sad that we as humans on this planet are so tied to our hair that it would impact our confidence and sense of worth and self. I was trying to determine if I would find it easier to live without a limb than hair and I think I would go with limb at times. That seems soo wrong.

Anyhow, I do my best to stay hopeful that a cure will r a revelation is on its way and we just need to find it.

Best and let me know if you move forward with the diet.

As an FYI- a friend mentioned to look into the Medical Medium and to buy his book.

Permalink Reply by Kathy in Denver on January 16, 2017 at 8:46am

I am only a couple months into this too. Not sure when it started but became very apparent late this summer around forehead. Now I realize my hair all over is thinner/texture changed. I think I lost the hair on my arms but it is coming back a bit. I never thought to pay attention to my hair in that way so I am just not certain of timing. It is a big shock. My eyebrows have thinned over years but not such that I thought it was an issue. About a couple weeks ago I noticed some new little hairs.

I have always been vegetarian for the most part. Went strictly dairy free a year ago this fall. This cured constant headaches and skin problems...cleared my body of so much inflammation. It was amazing..I felt better than ever and thought I was on a wonderful path of health. So, it is so odd that I have this now. I just had Alcat blood test that reportedly identifies what is personally inflammatory for each individual. I am no expert but I find it interesting to think since we are all individuals that it is not a one shoe fits all scenario.

I have alway leaned toward natural, more eastern ways and initially thought I would not take medicine for this. But I am 1 month into double barrel approach. This is after meeting with a dermatologist and eye doctor that I have a lot of respect for. So I am taking plaquinil...so far no issues...I guess it takes 2 months to become effective. I am doing a lot of acupuncture and yoga. I will tell you my stress is pretty high on some days but I am working hard.

I feel so much gratitude for this site and all the wonderful women on it.

Permalink Reply by Razors R Stupid on January 18, 2017 at 12:00pm

I think I need a new computer so I can do more on this awesome site. My son, Nathan, has alopecia. He started losing his hair in patches as a small child. In forth grade his kitten got hit by a car. He was devasted. That's when ALL of his hair fell out. I was told by one doctor it was "stress related. At my wit's end, I begged the doctor to give him a ton of sedatives. He refused. I was infuriated. Stress exacerbates it. Has anyone seen a doctor that gave/gives valium or clonopin? If so, did it halt the progression? My son is not happy about being completely bald. I think he looks fine bald, however,I wish he had eyelashes! His dermatologist said we could try topical drops to regrow eyelashes, but the side effects sounded too risky. Knowledge is power. I love this group.

Permalink Reply by Razors R Stupid on January 18, 2017 at 2:13pm

Yes, that is my son. Thank you. Latisse side effects are scary. I will look into Rodan and Fields. Thanks