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Recently diagnosed in Kansas
Recently diagnosed with FFA, first visit after diagnosis is Thursday, May 12. My scalp is extremely itchy all over including the crown and the back and along the back hairline. Is this typical? Does it mean my hair will fall out in those areas too, even though it is FFA? Just want to be as prepared as possible. My derm said the first thing is to take blood and get injections. From what I am reading that is common protocol, but I would like to hear opinions and experiences if you don't mind sharing.
I have already gained so much knowledge and strength from this group. Thank you!
Replies to This Discussion
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Permalink Reply by MJ on
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AReg,
So sorry for your diagnosis, but you have found a great source of info and support here. I honestly don't know what I would have done had I not come across this group.
MJ -
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Permalink Reply by DragonandFox on
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me too MJ! This disease is devastating! It has many variables and not only does hardly anyone understand what it is or know about it but many Doctors do not have a clue. Sharing details about the symptoms, pains and everything to do with the disease and the events leading up to it's diagnosis in this group has kept me sane.
NOBODY understands exactly what we are going through except us.
And thank goodness we can compare medications and treatments because not even the insurance companies have compassion for what we have since the word "alopecia" is in the name, they think we're "whining" only about "hair loss" and have no clue how we suffer from pain, extreme tenderness and itching.
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Permalink Reply by KarenGinny - Iowa, US on
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AReg, Hello, I have FFA and live in SW Iowa near Omaha, NE. I've had this condition for about 5 years now, started with itchy scalp and first lost a strip of hair along my back hairline which later grew back. My first Derm gave me cortisone shots several times and prescribed clobetasol for the scalp, but it didn't really do much , and I felt after the shots it got worse. He did a biopsy and dx's FFA, and told me he didn't recommend anything else. So for a year I did nothing, until I found a different derm and we tried Plaquenil. I ended up being allergic to it - itchy skin rash, so had to stop. Now I am on methotrexate to help with scalp inflammation. Now my hair loss seems to be staying the same, but I have lost quite a bit all along the temples and front hairline. I still have eyelashes and eyebrows, although they have thinned. I have not tried wigs or hairpieces. I can usually hide the loss with my hair style in bangs, but my bangs are thin and I know it has to be noticeable. When I am outside or in windy conditions, I usually wear a hat or baseball cap, or headbands to hide the bad areas.
Since I am a stay at home mom, and don't have a regular job to go to, I don't have the pressure to look good at work, but still, I do volunteer for several groups and don't want to look like a freak. I have come to accept it, but still have my bad days I don't want to leave the house. I'm glad it sounds like you have a dermatologist who is helping you. It seems like most treatments are geared towards preventing loss, but once the hair is gone, I'm not sure if much can be done. This group is wonderful in making me feel like I'm not alone, glad you found your way here! Karen
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Thanks, Karen! I had one round of shots, and they seemed to help the itching for a few days. I go for another round in a month. I am also going to try the malaria drug with very close eye and blood monitoring. I am also considering trying the gluten-free route. I am willing to try anything to hang on to the hair I have, although I would rather have a liver and my eye site, so that does sound a bit silly when I read it. :-) What an adventure... or would misadventure be a better characterization!?
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Karen, you are the perfect candidate for a clip in hair piece. You should do it now before the loss gets greater so that as the ffa progresses, you still look the same and it will not be shocking. I waited a little too long to get mine and felt it might be obvious to those I see everyday at work, but after a few weeks I think no one notices. Sometimes now people I have not seen for a while compliment me on my "new" hairstyle, and how good I look which makes me laugh. Anyway, you can go to a good wig place, someone who deals with cancer and alopecia so they are sympathetic for a fitting and styling, or you might get lucky online or somewhere else and your hair stylist can help to style it so it blends with your hair. Any more questions, give me a shout. good luck.
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yes,found that initially I was very itchy. Now much less with occasional bouts only. Have lost considerable inches from hairline and around ears. Am presently wearing a clip in topper, but just got fitted for an intralace system. However, it took a coupld of years to get to this point. Hang in there......!
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Good luck with your intralace system! That product is such a blessing to many!
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Permalink Reply by Penepat10 on
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I am in KC area. I am gone through the same thing. My dermatologist put into different medicines which cause blindness and liver kidney problems. I decided it was much better to have my eyesight and a healthy body, so of course I discontinued the medication. I do have bouts of very itchy scalp from time to time but I understand that is when the FFA is active. At the present I am looking at custom wigs I'm not sure if I should go with the custom wig or Jon Reneau? I have another consultation this morning I understand that the customer this can last up to two years which is incredible! I found a support group here in Kansas City, that's been very encouraging and a great help.
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Thanks, Penepat10! I started with the shots and go back in a month for more. They seemed to help, but who knows? I am also going to try the malaria med with close watch on my eyes and blood work. I think I'll try to go gluten free too. I figure it couldn't hurt.
How did you find the Kansas City support group? I searched for one on the web, but didn't have any luck.
Thanks again!
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Thank you for the information! I hadn't even thought to search for a wig shop nearby, so you doubly helped me. :-)
Happy Memorial Day weekend! -
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Permalink Reply by Chris on
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If he is talking about platelet rich plasma injections, the cicatricial Alopecia research foundation (CARF) just released a study about PRP injections. They found that it doesn't work for cicatricial Alopecias like FFA. Just a heads up. A lot of people get steroid injections, but I'm not sure how effective they are. I don't take any of the treatments due to the possible side effects. I would check out the CARF website for information. Our form of alopecia is much more rare, and it's different from AA. As far as the itching goes, I have it on and off now. It was much worse in the beginning. Even though my whole head itches, I've only really lost hair in the typical FFA pattern (front hairline,temples, and eyebrows ) I get a ton of inflammation and itching at the nape of my neck, but I haven't really lost hair there. A lot of us have also lost hair on other body parts. I've lost every single hair on my arms.
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