Replies to This Discussion

Permalink Reply by Airam-FFA on January 16, 2017 at 12:38am

Hi Kathy

I would also like to hear about FFA Burnout - it seems like a very distant light at the end of a very long tunnel, but also something positive to focus on. I am hoping that the Burn-out will come sooner rather than later. I am trying to be positive about it all.

xOx

Permalink Reply by DeniseC on January 16, 2017 at 3:44am

I have no idea how you know for sure that the hair loss has stopped. I thought mine had, but then my hairdresser said very casually the other day that the sides of my hair were worse.

So now I am working on the assumption that it might stop, it might not . . . that way I won't be so bitterly disappointed if it does just creep on in its horrible way!

Not a very useful response, but a heartfelt one!

Permalink Reply by Kathy in Denver on January 16, 2017 at 8:12am

Good question....how is burnout determined? I am still trying to figure all this out myself and have not got definitive information....maybe there is none. As I have mentioned in other posts, I felt (still feel) pretty grim when first diagnosed a couple months ago. Then, I met with a second doctor who said she had had some good results saying they now know better how to treat it. I am afraid to believe in that for obvious reason but I am also a hopeful person by nature. This is why I am seeking info for on experience.
I have stumbled across two people who indicated theirs had stopped...on this site...but it would be so helpful to have a "central" location of related posts. I plan to ask more about burnout at my next doctor's appointment in mid February. My head was spinning at the first one but she talked about the
passage of time and an absence of inflammation.

Permalink Reply by DeniseC on January 16, 2017 at 8:45am

Will look forward to reading what she says. At the moment, I am going through a very stressful time (including, yesterday, two of my very close friends died - two! - and one of those was really unexpected) so am trying to manage the stress, as I feel sure that contributes to the hair loss. But it is difficult. And deeply disappointing when you think it has stopped and then you discover it hasn't.

I know there are far, far worse things we could have, but sometimes, just like lots of other people on this site, I just feel so hacked off that it is there at all - and that it will be forever, one assumes. I can't see how, if FFA kills off the actual hair follicles, they can ever grow again. But maybe I am missing something?

Permalink Reply by Kathy in Denver on January 16, 2017 at 8:57am

Hang in there. My heart goes out to you in this tough time.

You hit a nail on the head...the scaring, permanent nature makes it more hopeless than other things. I am sure we would all make great sacrifice to heal/reverse but...

I am counting on new advancements that see to come faster all the time.

Permalink Reply by Airam-FFA on January 18, 2017 at 2:28am

Bless you Denise. A tough time for you. Stress always seems to be lurking around the corner.

I am eagerly awaiting the results from the doctors researching into the condition in London. If only they could find some trigger that brings on burnout quickly.

xOx

Permalink Reply by Christi Q. on January 16, 2017 at 10:29am

So, what treatment does your doctor have you on Kathy? Mine has me on Rogaine and Dutesteride.

Permalink Reply by Regrow on February 14, 2017 at 12:05am

Scalp inflammation is actually caused by DHT.  In layman's terms, the DHT is toxic and it gets in the bulb of the follicles.  The bulb is what holds and stabilizes the hair (1-4 hairs per bulb).  Get rid of DHT and inflammation settles down and eventually ends.  No more inflammation, no DHT in the hair follicle "bulb" and hair begins to regrow.

I've posted many posts on this platform about how Monat Global (stands for Modern Nature) addresses the DHT in their Science of Monat.  I hope this helps.  If I can help any of you, let me know. 

Read:

http://barbaralinzey.mymonat.com/science/index.html

These products are anti-aging, and are for hair thinning, alopecia and almost every hair issue out there.  Makes sense to me.

Barbara

Permalink Reply by Kathy in Denver on January 16, 2017 at 12:27pm

I am 1 month into a prescription of plaquinil and a topical called tacrolimus. She said she was hesitant to have me use rogaine right now due to the way patients react to the initial shed that it can cause. While I am still tempted I know I do not need to raise my stress right now. Christy/others, can you tell me how rogaine went for you when you first started?

She said there is a next step she moves to if she does not get results with my protocol. When asked, she said she did not often have to move to that. Hard to have faith. If all this is true, I do not understand why there arn't more posts to confirm.

Permalink Reply by DeniseC on January 16, 2017 at 12:49pm

Over the past year or so that I have been reading these posts, I have seen SOOOOOOO many posts asking the same questions - what works? And how do you know it works? I think that there are many medics out there trying to find a solution, but as they don't really know what causes the condition, I assume it is hard to find a cure, especially a one-size-fits-all cure.

I still think that in fact there might be different conditions all leading to the hair loss - there seem to be lots of different symptoms, not just hair loss. And if that is the case, then I guess (and I am NOT a medical person!) it makes sense that something might work for one person but not another.

I just do not believe that for me, there is one root cause. I feel the FFA is a symptom of something deeper and more complex, linked to autoimmune problems (they run in my family in lots of different, but marked ways), and possible environmental factors like SPF. But who the heck knows?

Permalink Reply by Sas Holland on February 2, 2017 at 2:59pm

Hi everyone,

I had posted my story on the site earlier in nov. 2016, but will post it again here. I am not sure it has really burned out of course, but it is at least dormant for about 2,5 years now, since It was officially discovered through a biopsy in nov. 2014. I do not visit this site very reguarly anymore and disabled the email warnings from this site, because it feels much better for me not to think about my FFA all the time. And this is easy offcourse since I don't feel or see anything happening on my head.

History:

I was diagnosed (with a biopsy) last nov 2014. I am 52 years old now and was at that time not menopausal. I am still having my periods fairly regular today, but not as regular as they used to be.

I lost my eyebrows about 12 years ago very slowly and since I never had much eyebrow hair I never thought of a disease at the time. When I look back I can see now that I had a lot of stress at that time concerning the wellbeing of one of my children. But I just had my eyebrows tattooed from then on regularly every 3 years. After the first time, my eyebrow hair, or what was left of them, fell out completely very soon.

It is only since I went to the Hair Science Institute in Amsterdam in august 2014 to discuss a stem cell transplant for my eyebrows I know about FFA. Their doctors Novia Mozart and Coen Gho then told me they suspected I had FFA. I was in total shock. I never had an itchy or flaking skin or redness on my scalp, so I never really noticed. I also have worn curly bangs my whole life, because I have had eye surgery on my (since birth paralysed) right eyelid. So you can never see my forehead properly.

I did notice in 2014 that the top of my forehead was very shiny though. And I began to sweat more at the hairline. The strange thing is that since I have the diagnoses I did feel it itching a bit every now and then at my hairline and my eyebrows, but not so much that I needed medication for it. But maybe the itching is psychological because I know now about FFA and am very conscious of it.  My hairline has receded about 2 cm I guess when I see old pictures of me and it is still fairly easy to hide with my curly hair.  Strangers do no notice it, because I have al lot of curly hair.

 

Biopsy:

My biopsy showed very little inflammatory activity in Nov. 2014, but it (FFA) is definitely there though, they said. So I guess my FFA has been very slowly active the last 12 years because I never really noticed my receding hairline before 2014. I also only then became aware  (after the doctors pointed it out) that I don't have any hair on my arms and on my upper legs. I do still have eyelashes thank god.

 

Stem cell transplantation and Cyclosporine:

My derm professor dr. Neuman from the Erasmus hospital in Rotterdam wanted me to start on Cyclosporine A, but I never have needed/used a lot of medicine in my life and since my FFA was very little active I didn't want to take such a strong and heavy medicine (yet). This Cyclosporine is very bad for your kidnies and can give you high blood pressure. They told me the Cyclosporine was a must if I wanted the stem cell transplant to restore my hairline. 

They would only perform that if I took the medicine and the FFA has to be dormant too (like mine was). They would do a test stem cell transplant on a little area with 50 grafts first and then I would have to wait 9 months to see whether the new hair would fall out or not. If the hair would stay then I would need 3 stem cell transplants, each 9 months apart, to fully restore my hairline they said. With the Cyclosporine to be taken every time for about a couple of months. This medicine sometimes slows down the FFA completely they told me.

And a small risk from the stem cell surgery with the tiny incisions itself would be that the dormant FFA can be in fact activated again. That is why you need to take Cyclosporine before and after. This risk is much bigger if I would have a “normal” hair transplant, since the holes/incisions they then make will be much bigger. That’s why a FFA patient should never have a “normal hair transplant” they told me.  This is also I think the reason that after my first eyebrow tattoo (tiny incisions), all the remaining hair fell out quickly. But I cannot tell for sure that was the reason, it could have fallen out completely without the tattoo either.

He told me then that these stem cell transplants are still expirimental. They had treated about 50/60 women with FFA so far (in 2014). They first did one in 2011, they treat all FFA patients in the Hair Science Institute in Maastricht in the Netherlands. He thought about 80% of them still had the transplanted hair, back in nov. 2014.

Other medication:

Dr Neuman also told me that the “usual” medication like Finasteride, Ketaconasol, Dutasteride, Rogaine and Minoxil 5% don’t work for FFA patients, only for the male form of baldness, which can also occur in women.  These medicines work for hair follicles that are being blocked by male hormones. The difference is that with FFA the hair follicles are completely destroyed. There would only be a chance of re-growing some short fuzzy hair.

About steroid injections he said that they would only work for a short period of time so you would have to repeat them over and over and that that would wreck your skin.

 

Auto-Immune disease and diets:

I started to look for more information on FFA as an autoimmune disease and found a lot of information there in relation with food and a leaky gut and the Autoimmune Protocol (A.I.P.), which is a anti inflammatory diet. I hoped that by eating differently I could at least have a bit of influence on my FFA, to stop it definitely.

I have read a book from a doctor called Sarah Ballantyne (she is also called "the Paleomom" and the book is called "The Paleo Approach" It's especially for people with an autoimmune disease.  

A.I.P. is an elimination diet for about 4-6 weeks; no grains, pseudo grains, dairy, nuts and seeds (and spices and oils from them), nightshades, legumes, refined sugar and adding other healthy foods. Than you can gradually start to re-introduce very slowly.  I have done it for about 8 weeks. The first week was very hard for me; I didn't know what to eat for breakfast at all. Then it was easier and I had no hunger and the weight loss was a bonus as well. Well, after all I did not notice anything different from this diet, I already felt good overall and had no pain or a lot of itching so I stopped the diet after these 8 weeks.

Then I decided to give another diet a chance based on my blood levels of IgG.

I had my blood tested for all 4 classes of IgG (immunoglobulins) on 360 sorts of food and I got a list back of al sorts of food, which I should never eat again. This test was very, very expensive and I tried this diet for about 5/6 weeks. I also got acupuncture at the same time (same pseudo-doctor) and did not notice anything different other that this diet was also very hard to follow. Since I never really had pain or a lot itching I stopped this diet too.

I have taken vitamins like D, selenium, used Emu oil, but stopped with all of them. My doctor said that synthetic selenium will give a highly increased chance of developing skin cancer.

Past 1,5 years:

The past 2 years I have not tried anything else, I eat normal and have never used any medication. I am no longer seeing my derm or any other doctor regarding this.

I did start meditation lessons to lessen the stress and that have helped me in general a lot not to worry about my hair so much. This is of course not so difficult since I can hide my FFA still fairly well. I also started to say possitive affirmations almost everyday  like for instance  "my body is whole and healthy and will heal itself".  I am however still unsecure about my bangs and keep putting my hands through it all the time. I am very aware of my hairline now that I know about FFA. But I concider myself very lucky that I do not have to wear a wig (yet) and that other people don’t notice it at all. I am happy with my tattooed eyebrows as well, much better then drawing them everyday. I  have hopes my FFA has burned out completely instead of being just dormant.

Permalink Reply by Christi Q. on February 2, 2017 at 3:33pm

Sas Holland, thank you so very much for your extensive information. I was diagnosed a few months ago with FFA and I have never been more stressed out in my life!! I am reading everything possible, but I really enjoyed your input. Thank you for taking the time to write all of that.

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