"hey Heather, so I saw Dr Lindsay Bardone at Columbia. I really liked her a lot. She is doing research on FFA and wants to publish a study on it in JAMA. My NJ derm had me doing betamethasone dipropionate 2x per day and rogaine 5% foam 1x per day. Dr…"
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"I have also lost most of my hair on my legs, arms and underarms. No more shaving isn't so bad. I noticed this long before my hairline too. My skin is extremely dry and itchy but not red."
"Hey Clazsis,
Do you use oral or topical tacrolimus? Maybe I will ask about this med bec I have used clobatasol and Rogaine with little improvement. Thanks. --Coleen"
"I see Dr. Lauren Wiznia in Manhattan. She has been incredible and is very knowledgeable about FFA. I was diagnosed in October and have already seen great results. I am on 20mg of Accutane, tacrolimus, clobetasol, and romaine. The…"
"And if you get better results than I have, I will try your dermatologist. Lol."
"Thank you, let me know how it goes in NYC. I'm in Morristown so close to Parsippany. I'll continue with my dermatologist in Florham Park for now. I go back in three weeks for more steroid injections. Now that I'm a little more…"
"Hey Heather, I have been treated by Dr Ellen dabela in parsippany, NJ. The treatments we have done so far have not stopped my hair loss. Have done clobatasol, oral antibiotics, oral steroid, steroid scalp injections. Starting on an anti-inflammatory…"
"Hi, I was diagnosed a year or so ago but it wasn't until now that I'm really noticing it. I've lost probably 1 inch of my hairline, and even further around my ears. I keep holding on to something I read that said it often stops on its…"
Frontal Fibrosing Alopecia
This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.See More
Profile Information
- Relationship Status:
- Single
- About Me:
- I was diagnosed with frontal Fibrosing Alopecia a few days ago. I noticed thinning eyebrows and decreased hair on my arms and legs more than a year ago but my primary Dr wasn't concerned. I hadn't noticed how much my hairline had receded but now I'm a little obsessed looking at photos to try to figure out when it started.
- Do you have alopecia?
- Scarring alopecia
- Are you age 18 or older?
- Yes - I am 18 or older
Comment Wall (2 comments)
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- At 5:26pm on February 14, 2020,
ohnonotme said…
hey Heather, so I saw Dr Lindsay Bardone at Columbia. I really liked her a lot. She is doing research on FFA and wants to publish a study on it in JAMA. My NJ derm had me doing betamethasone dipropionate 2x per day and rogaine 5% foam 1x per day. Dr Bardone is having me reduce the betamethasone to 2x per week and keep doing Rogaine 1x per day. she prescribed tacrolimus 1 mg capsules and wants me to mix them into rubbing alcohol and apply 1x per day to my scalp. she also wants me to take zyrtec, an antihistamine, 1x per day. my breast surgeon told me in Jan they don't want me taking any immunosuppressant meds, so I don't know if the plan would have been different if I had never had breast cancer. she told me I could keep getting highlights in my hair. and she didn't seem keen on dietary restrictions or on avoiding certain skincare products. I will let you know how the tacrolimus goes. I see her again in 6 weeks although I hate driving into Manhattan. lol. --Coleen
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