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.

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Comment by Patricia on December 7, 2013 at 8:06am
I have had two shots so far, just starting, I cannot say whether they are working or not. I also had laser treatments for a year and a half, they helped by slowing the hair loss and promoting the growth on some parts of my hairline. However, it is quite expensive. I am now having acupuncture, twice a week, but just started so hard to say if this will work. I have lost most of my eyebrows, so I had permanent make-up applied (tattoo) and I use Latisse for my eyelashes, and it really works, my eyelashes are long and thick. As for the shots , I have to give it some time before I can say whether it works or not.

I have read that Latisse is developing a a medication that will work on the hair. Let's cross our fingers!!
Comment by Patricia on November 20, 2013 at 11:10pm
Thank you. The thinning on my sides was already there, before shots so it will bechard to associate that to the shots. I really don't know what to expect. I have started acupuncture.... One more thing to try!
Comment by Sam on November 20, 2013 at 10:44pm
I did 3 rounds of injections. I did not have indentions because they were done a cm back from my hairline. However I have had a lot of hair thinning on my sides. I don't know if it is a coincidence or related but I am calling it quits for the shots and going to see what happens without them.... Tuff call. Good luck! Just make sure they don't so the shots where you have no hair, I think that is how you can get visible indentions.
Comment by Patricia on November 19, 2013 at 8:57pm
Has anyone had injections on the scalp? My doctor wants to proceed with this teeatment but I would like to know if any of you has experienced any side effects a what the are. Someone mentioned indentations, couod you explain more, please.
Comment by Candace on September 24, 2013 at 12:38am
From our experience if you don't see improvement in 4 months or so. The shots aren't going to work. Rogaine is a total loss and waste if money. My daughter began shedding and as clumps came out and she was terrified every time she showered she would clean the drain with yet another handful of her locks. This week after on year. We called it quits. We shaved her final hairs. We cried. We tried the wigs but felt they were fake. She decide to go boldly natural. The positive responses from friends, college roommates and family have been nothing but awesome. We walked the campus tonight and went out for supper with great success. I say try treatments. If in 6 months no progress. Stop. Don't do oral meds as more dangerous than hair loss. Don't hide your secret begin accepting that you might not have hair. Rejoice if it works! If not accept what can't be changed and live beautifully. No one judges as harsh as you do on yourself. If they do they don't belong in your world! Best of luck.
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.

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 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 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 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...

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