Alopecia World
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Joining FFA Clinical Research Study
Yesterday, I had my first appointment with Dr. Olsen at Duke University. My biopsy came back as LPP and she confirmed FFA during the visit. They took photos, measured the hair loss and I was entered in the voluntary clinical research study.
For the moment the study is just a questionnaire. I haven't started it yet. I plan to sit down and do it over the holiday break. Thanksgiving is this week in the U.S.
The doctor said it will take an hour to complete once I have collected all of the zip codes of everywhere I've lived and all of the names of my beauty products. She said researchers do think the disease has an environmental cause since they are seeing more pre-menopausal women (like me) who have it and also because it only appeared 20 years ago.
She said she didn't see any visible inflammation on my scalp. I told her I've never had itching, redness or swelling just scaling. I think that is why it has taken so long to diagnose. I first noticed the hair loss three years ago and the first dermatologist I saw said it was alopecia areata.
I have been taking Plaquenil and was told to stay on it. I was also prescribed Finasteride (5 mg or half a tablet) and I am to alternate between minoxidil 5 percent and tacrolimus ointment (0.1 percent). I was told to stop using clobetasol.
They also took a bunch of blood for testing. I am to go back in three months.
I feel a bit numb but trying to stay hopeful. She told me the hair around my bald patches has good density so she thought that was a good sign. For now I am able to cover the bald spots with my own hair and I'll hang on that as long as can.
Oh, there is one small glimmer of hope. She did say researchers are now thinking regrowth can occur. It's really hard to predict though and it effects everyone differently. She also said early intervention is important and I came a good time to try and save the hair I do have.
I got a copy of the paperwork I signed to enter the study. It lists the other doctors and clinics that are participating. I can send you all those names if you all are interested.
Replies to This Discussion
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Permalink Reply by PamW San Diego, CA, USA on
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How often are you to take the finasteride?
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Permalink Reply by Lauren on
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I'm definitely interested in the Drs and clinics participating. Also how are the researchers thinking regrowth can occur? What is it that works?
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Permalink Reply by ammie on
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Participating clinics are: Cleveland Clinic, Callender Center for Clinical Research, University of Pennsylvania, University of Minnesota, Wake Forest University, The Permanente Medical Group, Northwest Dermatology and Research Center, NYU and University of British Columbia, HCT Pathology Services and University of Miami.
No idea how the regrowth can occur. All she said was they thought it was permanent but now they are thinking may be not? Sorry, it's not much to go on. I think the big issue is the disease is so unpredictable and so new they just don't know.
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Permalink Reply by sallylwess on
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Do you use minoxidil once a day and tacrolimus the next day? I hope this all works for you. This is all very encouraging.
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Yes, I alternate between the two. Not sure how well it's working yet. We'll see. Fingers crossed.
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Why did your Dr. have you stop the clobetasol? I'm on Clobetasol foam and I don't think it's doing anything. I'm still waiting for an appointment with the Dr. in California who is participating in the study. She said she probably wouldn't see me until December.
Does the biopsy come from where you still have hair, or is it taken where the hair has already fallen out? I want to participate in the study, but I know they will have to do a biopsy to confirm, even though all the Dr.s are positive that I have FFA just from looking at my hairline. -
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Sorry it's taken me a while to respond. It's the Thanksgiving holiday weekend and I've been inundated with family, food and trying to keep a clean house. I haven't even had a chance to pick up my new meds yet but it is keeping my mind of off this disease.
- For now the study is a questionnaire. I haven't taken it yet. I need to schedule a time to do it. Dr. Olsen said it will take at least an hour. Participating clinics are: Cleveland Clinic, Callender Center for Clinical Research, University of Pennsylvania, University of Minnesota, Wake Forest University, The Permanente Medical Group, Northwest Dermatology and Research Center, NYU and University of British Columbia, HCT Pathology Services and University of Miami. I can get you the doctor's name if you live near one of those clinics and want to contact him or her.
- As for the possibility of regrowth she didn't provide specifics, only they are now thinking there is potential for re-growth when before they thought the hair loss was permanent.
- She instructed me to apply minoxidil one day and tacrolimus the next day. So to alternate between the two. I haven't started yet. I need to make time to go pick up the prescriptions. I will definitely let you all know if I feel it's working.
- She didn't say why she wanted me to stop the Clobetasol. But she prescribed tacrolimus, another topical steroid.
- The biopsy was taken from part of the hairline that still has hair. It showed I had mild inflammation and came back as LLP. Dr. Olsen confirmed FFA once she saw the pattern of hair loss. It was quick. They numb the area. It kind of feels like someone is braiding your hair too tight in one small section.
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Permalink Reply by cbs1007 on
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I was just recently diagnosed with frontal fibrosing alopecia. I'm shocked, upset and panicked. Could you please tell me how you got enrolled in Dr. Olsen's study? Are there other experts in the country that I should try to see? Thanks so much for any information or advice!
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I was referred to Dr. Olsen by another dermatologist who diagnosed me after a biopsy. I live in North Carolina so it was easier for me to get in to see her.
Try not to think it about it so much. I know that's hard but I find the less I dwell the more I am able to carry on. Good luck to you.
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