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.

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Replies to This Discussion

Permalink Reply by ammie on January 4, 2016 at 4:57pm

I am taking 200 mg twice a day of Plaquenil. 

Permalink Reply by Ruth on April 1, 2017 at 8:52am
How do I add to the chart??
Permalink Reply by pauliegirl on July 15, 2017 at 10:57pm

Are you still getting any interest in the chart you made? I think it is great! 

Permalink Reply by DW on January 10, 2016 at 11:50pm
This is extremely interesting. I have been diagnosed with FFA as well, approximately three years ago and have lost a significant amount of hair. Does anyone know if there are any clinics in Ontario, Canada participating in the studies? Thanks.
Permalink Reply by ammie on January 11, 2016 at 4:17pm

Not sure. Here's the list of clinics in the information that was provided to me:

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.

Permalink Reply by DW on April 1, 2017 at 9:04am
Annie thank you for this list. Sorry to be responding so late, I only saw your response now. Sadly there isn't anything near me then if that is the extent of the list.
Permalink Reply by Ruth on April 1, 2017 at 8:50am
DW hi! I'm in Ontario as well. Just outsie Toronto. Have you found any great doctors out here or any functional/homeopathic ones? Thanks!!
Permalink Reply by DW on April 1, 2017 at 9:24am
Ruth hi! I am in Toronto, although moving next year, outside the city.
I saw Dr. Jeff Donovan who is very instrumental in research and treatment in the field. He has an instagram account that he posts on regularly too that's very informative. I had an appointment with him that took about nine months to get at Women's College Hospital (I believe he was only working there one or possibly two days a week as he has his own clinic where he does hair transplants). I have learned recently that he is no longer seeing patients at Women's College Hospital.
I think I would rather try a more natural approach now in any case - from everything I read here, I'm not seeing anyone getting much in the way of positive results from the injections and multiple drugs...and reading about the possible side effects worries me. It would be quite ironic to wind up with something worse as a result of trying to treat hair loss!
Permalink Reply by pauliegirl on July 15, 2017 at 10:36pm

hi!

What an encouraging post amidst the usual feelings we all have! I am really interested in the research. Would you still have the list of doctors and clinics? I am really thinking chemical SPF plays a role in all this! 

Thanks so much and hoping this finds you well,

Jamie

Permalink Reply by Loveste on April 2, 2019 at 7:31am

Oh, I remember how hard it was to write research papers when I was a university student. And I didn't even know about services like https://rapidessay.com/order-research-paper.html at the time, sadly. If I knew, it would be much easier for me to study.

Permalink Reply by HeatherG on April 19, 2019 at 12:01am

Hey there! 

Thanks for sharing...Are you still seeing Dr.Olsen?  How is your condition now?

I live in Durham and just found her online last night, and this support group tonight (which your post was on the home page, and the first I’ve read) and only wish I would’ve found years ago when my FFA condition first started with gradually erasing my eye brows completely before moving onto attacking my hairline. I’ve been so confused, preoccupied, and emotionally exhausted by this condition ...I didn’t even know what it was until less than 6 months ago I was finally diagnosed (after years of trying to diagnose myself with online research)

My current dermatologist (the 2nd dermatologist I’ve seen and who finally diagnosed me with FFA just months ago) will hopefully send Duke a referral so I can see her and do whatever it takes to get this under control. He’s been giving me injections around my hairline for the past 4 months, which initially seemed to be working, but now not so much..

Looking forward to hopefully hearing back from you.

Thanks!

HeatherG

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