Okay I just joined this website a couple of days ago. I have seen so many positive and inspiring stories. This is just what I needed. However I have been reading as many of your blogs as I can. It seems that everyone has been given different treatments from their doctors. Some a topical steroid, injections and oral medication. It seems positive. However it seems like the success rate is very small.

My question is do I take steps to proceed further and try to stop what is going on with me or just let it run its course. I have been reading so many different websites regarding FFA and it seems like the final answer from all of the websites it that it is a rare condition with no known treatments or cures. No one can even answer what causes FFA. Further more does anyone know how much hair will come out. Does it just stop and become permanently dormant. If I knew I would have no more hair loss I guess I could just live with this.

Does anyone have any answers for me. I fear even my doctor won't have any clear answers when I see her. She is suggesting I do the injections. I am just so confused.

Views: 179

Comment by Unicorn on September 3, 2013 at 8:29pm

I would never discourage anyone from treatment, because you dont know until you try. I've been dealing with alopecia areata for over 10 years, currently 23, and in the beginning I used to use creams, no improvment, then injections and an extra shot in my hip every 3 months for hope of regrowth. This was an ongoing thing for about 5 years every 6 weeks. I got to a point in my life where I accepted myself and my hairloss and cut off treatment. About 3 years after I stopped the treatments I had alomst all my hair grown back in. But due to some life situation I believe caused my hair to fall out again, but alot slowwer and less noticable. I wiaited until I felt it was too noticable to go to primary and ask for a prescription for Olux foam which always helped limit the spots from growing and increased the grow of new hair, 2-3inches every month and half to 2 months. I moved across country and experienced signifacate hairloss the couples months before the move to currrent. I've been going for injection for the past 4months and for the first time the shot actually worked, But now that the spots have grown in new ones are starting to form.Everyones body is different. I wouldnt rule anything out. I've tried some wild remedies in the past. Best of luck.

Comment by Tallgirl on September 3, 2013 at 10:34pm

One online site says this:

Alopecia areata is categorized as an auto immune disease, and occurs when the body mistakenly treats hair follicles as foreign bodies and tries to destroy them. It appears as areas of patchy loss on the scalp, but can spread to the entire scalp (alopecia totalis) or even the entire body (alopecia universalis).

Patchy loss due to alopecia areata can often be treated, via steroid injections or a high strength minoxidil cream + azelaic acid, but when the hair loss becomes more extensive treatment is less likely to be effective. The extent of alopecia areata can wax and wane, and spontaneous remission can also occur. Because of the different extents to which alopecia areata can cause hair loss, people often wrongly assume that hair loss is due to other factors, but patchy loss all over the scalp is almost always due to this type of alopecia.

Whilst alopecia areata is caused by an auto-immune function in the body, it also seems that it can be triggered by various environmental factors. Whilst research into this is still ongoing, it would appear that everything from stress and shock to allergies, pregnancy and illness can trigger the condition.

Some people also wrongly believe that it needs to be an ongoing trigger to maintain the condition, or that alopecia areata will cease to be a problem when the likely trigger has been identified and stopped. Sadly this is not the case, as once an autoimmune disease is initiated it can be self-perpetuating. Tissue destroyed in the early stages of the disease can be broken down and the antigens presented to immune system cells in the lymph nodes. This recruits more self- reactive cells, which destroy more tissue producing more antigens, and so the cycle continues.

Comment by Tallgirl on September 3, 2013 at 10:37pm

And then, there is this:

June 30th, 2010
01:08 PM ET
Researchers find gene linked to hair loss

Researchers at Columbia University Medical Center believe they have found the genetic basis of alopecia areata, an autoimmune disease that attacks hair follicles and causes people to lose their hair.

The findings could make it easier to develop new treatments for the condition, in which loss can range from patches on the scalp to complete absence of hair on the entire body. Affecting approximately 5.3 million people, AA is the most common autoimmune disease in humans and is second only to male pattern baldness, when it comes to common forms of hair loss. There is no cure and no effective treatments, aside from painful steroid injections to the scalp that don't always work.

Dr. Angela Christiano, professor of dermatology and genetics and development at Columbia University Medical Center, was lead author of the study. She noted her team's discovery is important because it was originally thought that AA was more related to inflammatory diseases, such as psoriasis, where a particular cell attacks the skin. But during their research, Christiano and her investigators learned that AA is actually more genetically related to celiac disease, rheumatoid arthritis and type 1 diabetes – and since there are many drugs under development and some on the market already for the same gene targets, new treatments for AA should be relatively close by. That makes Christiano happy. Not only because her research will be helping millions of people, but she herself may benefit. She, too, suffers from AA.

"It gives us hope, that some day there may be a cure for this condition," she says. " It gives pharmaceutical companies a target to go forward and start developing new drugs to fight AA."

This research was conducted using more than 1,000 samples from the National Alopecia Areata Registry, a patient registry for alopecia areata funded by the National Institute for Arthritis and Musculoskeletal and Skin Diseases at the National Institutes of Health. Columbia University Medical Center is one of five collection sites nationwide. Christiano and her team uncovered eight genes that underpin alopecia areata. Among the eight genes, one stands out for its potential role in the onset of the disorder.

"This research is very exciting as alopecia areata affects a huge number of people worldwide," said Vicki Kalabokes, president and CEO of the National Alopecia Areata Foundation . "Hair loss is life-altering – sufferers, especially children, experience social stigma. It affects their quality of life and can lead to long-term psychosocial impact."

Alopecia areata usually starts with one or more small, round patches on the scalp and may eventually progress to total scalp hair loss (alopecia totalis) or complete body hair loss (alopecia universalis). In some people, hair may grow back in or fall out again at any time. Not only is the condition difficult to deal with physically, but emotionally the patient never knows when it will happen again.

Christiano's team looked for a correlation between how many genes (each gene comes in two pairs) people with different severities of alopecia areata carried, and found that people who carried 13-14 genes had disease that did not progress, while those with 16 or more most often progressed to alopecia universalis, or total baldness.
With this new data, Christiano and Columbia researchers are developing a genetic test that may eventually predict the severity of disease.

"The advantage of this large sample size is that we can be sure that this group of genes was identified with a high statistical significance and did not happen by chance," said Christiano. "The next step is to replicate this study in future research."

Comment by Tallgirl on September 3, 2013 at 10:39pm

Also go to www.naaf.org.

Comment by LittleRhody on September 4, 2013 at 5:14am

Thank you Unicorn for the advice. It is encouraging. I'm still up in the air with the injections. I didn't realize every six weeks I would have to do them. I guess I could try the first round and than go from there. I am thinking about trying Rogaine for men this time. I feel better with the topical stuff. I have been using Latisse on my eyebrows for about 1 1/2 months now and I have to say I just looked at my eyebrows this morning and they are starting to grow. New dark eyebrow hairs. I feel so great about that.

Tallgirl thank you as well for your feedback. I totally understand this is an autoimmune condition. It is always good to find out first hand what people are using on themselves and what works. Even if it is only false hope. It still makes me feel better. Also I have FFA which is a little different than Alopecia Areata and according to what I read less common and seems no cure. I think the treatments are a little different. I am always looking for suggestions and support.

Comment by Sam on September 6, 2013 at 12:17am
I did the shots for the first time about a week ago. I also changed my diet going on 2 weeks (trying the Paleo autoimmune version, with a bit of cheating here and there). I do feel like there has been less visible hair loss... Not sure if true or wishful thinking. I also just started a topical tonight (hydrocortisone butyrate .1%). I actually just did tiny bit, wanted to make sure it doesn't make my hair fall out first... I plan to try shots for 3 months (once monthly) on the third my doc will do measurements (he measures hairline, hair thickness and my fav, how many hairs in the specified area) I will then hopefully have a idea if working, not, or too soon to tell...
Comment by LittleRhody on September 6, 2013 at 4:02am

Sam just wondering how many shots did they have to give you? Since our hair loss is primarily on the hair line I was wondering is it three sticks with a needle or more like jabs all over. I am going to my doctor October 9th. I will probably get the injections to try. I am using the Clobatosel(spelling off sorry) cream now. It does not seem to be working. It seems like the process was so slow in the beginning and now it seems like I loss more and more hair every day. Well let me know how you make out if you see any results. I am very curious.

Comment by Sam on September 6, 2013 at 6:37am
It was actually 30 shots. Starting behind one ear and then wrapping all the way up and over to the other ear. It wasn't too pleasant but bearable. It was one centimeter behind my hairline so in my hair. I hear talk of indentions but wonder if docs are doing it where hair has already been lost and they shouldn't. My thought is indentions should b in hair so shouldn't show... As for that lotion u r doing, one of my docs prescribed that one but my NYC doc said he doesn't use it anymore Bc it causes veins on the face to come out. I read of another person on this site that it indeed happened so b weary of that one. Maybe look into that side effect more and if seems valid maybe change or just be really careful. Good luck. Maybe try the diet change just in case...I will keep u posted.
Comment by Sam on September 6, 2013 at 8:17am
So...may be a fluke but I feel like more hairs were falling from my side this morning where I thought it slowed so worried it may be the Hydro cort i put on last night where i skipped the lattise. i think when i dud creams on my brows, they got worse. Wondering if I should wait on that can focus only on the shots to see if that alone works... Crazy this is such a guessing game!
Comment by LittleRhody on September 6, 2013 at 6:37pm

Sam, Oh wow. 30 shots. That is alot. I'm am so up in the air on those shots. I go back and forth whether I want to do them or not. I have been using the cream for about two months now I don't see any veins. Hopefully I won't get that. I hope that it wasn't just a fluke. I hope your hair starts growing. I would still use the Latisse. I am having some good results with it. I have some new hair growth. I wish is were more but the doctor said it would take about 3 months. It has only been 1 1/2 months. We will see. Good luck.


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