Alopecia World
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FFA confirmed by hair loss specialist; prescribed: Dutasteride, Doxycycline, and Clobetasol w/ Minoxidil
Hi All,
I posted a couple months ago and stated that I suspected I had FFA. After going to one dermatologist who basically said my eyebrow loss was medical mystery, I did a lot of research and decided to go to another dermatologist who specializes in hair loss. I told him I suspected I had FFA, and I thought I needed a biopsy to confirm. After examining me, he said he was 95% sure that I was right, and he said he didn't see the need for a biopsy unless I wanted it. My insurance won't cover anything related to alopecia, so I decided to skip it, although I'm wondering if that was a mistake?
The doctor initially prescribed Doxycycline and Clobetasol, and he suggested I use Rogaine, but he also agreed to Dutasteride after I requested it. Although, he made me guarantee I would not get pregnant because of potential fetal abnormalities. I was researching the Doxycycline and found a study that stated it should be prescribed with caution to women who are of childbearing age and have a BMI of 40 or more because in rare cases it could lead to permanent blindness. YIKES! I am only 34 and considerably overweight. I don't think I'm willing to take that risk. I've also read that Clobetasol only helps with the inflammation, not the hair loss. I do have the occasional burning sensation, but it is tolerable, so I may just stick with the Dutasteride and Minoxidil. The research seems to indicate the best results stem from Dutasteride, so I'm hoping this will halt the progression of this disease.
What are your thoughts on this?
Also, is there a place where you all compile original research? I've come across a few recent studies that I think many would find interesting, but I wasn't sure if I should make individual posts for them and attach the PDFs or not.
I'm so very glad I found this site. It's nice to read posts by people who totally get what it is like to be going through this.
Replies to This Discussion
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Permalink Reply by Ellen on
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I'm in the sun most days too.
To my knowledge, I've only recently begun on this trip. I am not happy. Seems like its going to rock my world!
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Hi illustr8r,
I requested Dutasteride, which is basically a more potent form of Finasteride. They both block DHT, the hormone that leads to hair loss, but there are two types, and Dustasteride blocks them both, whereas Finasteride blocks one. Both have shown to be effective thought, and Finasteride tends to be cheaper....okay, not really what you asked : )
When I requested it, I said that I had read research that had shown it to help, and he agreed. He also made me assure him I would not get pregnant because there is high likelihood of fetal abnormalities. I would just ask for it, and if your doctor seems reluctant, I'd ask if they would consider looking at the studies you've read.
I'm on the same page about the Plaquenil. I don't want to risk my sight. It's the same reason I've not started taking the Doxycycline I was prescribed. That and there is a risk of abnormal weight gain that concerns me. Additionally, I have read multiple studies that report Clobetasol does not seem to help (at least with hair loss), although I've seen people comment that it helps with the irritation. Instead, I've been using a topical immunosuppresent (Elidil). I'm not sure if it's doing anything, though. I still have redness, but it's only been a couple weeks.
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Not very long. I started everything at the beginning of June. I haven't had any side effects so far. I've read it can take 3 months to start seeing effects, and it can take 6 to 12 months to see the full effects. I also read that there is frequently a shedding period when you first start taking it, which can freak people out. I think my shedding is just starting to increase, but I've always shed a ton, even before the FFA, so it's hard to tell.
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I went to my doctor today. He is having me take Minocycline. Its an antibiotic. Then maybe ease me into Finsteride. I took the article in that either you or Jess posted. It was a Finsteride study with a picture of a woman whose forehead atrophied. He said that she probably atrophied because she had too many steroid injections, so be careful.
He is giving me Minocycline because I took it last winter and the red spots went away. I may stay on that, but it is to be determined.
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Permalink Reply by illustr8r on
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Good luck to you Ellen! I hope you feel better.
I've started the AutoImmune Protocol Diet that was mentioned in another post. I plan to stay on it at least 3 months. So far so good. I miss my morning coffee though! To see if it's working at all the hair fall has to slow or stop and my blotchy red skin needs to fade. Right now, I'm not itchy which was another symptom I was looking to stop. -
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HI there-
Do a search for a thread in our group called " New to FFA" by Temmelou. CarolJ posted there about her success with slowing hair loss and skin problems by doing the AutoImmune Protocol Diet. She has helpful links there too- not sure if it's okay to copy/paste someone else's post- so I didn't want to drop it in here. :)
I bought this book and it's very very helpful- after weeding through too many talky blog sites and scientific talky books. Just the facts ma'am!
http://autoimmunewellness.com/a-simple-guide-to-the-paleo-autoimmun...
You basically cut out, dairy, eggs, grain, beans, sugar, certain spices, nightshade veggies, coffee and alcohol for 1-3 months. Your body resets and stops attacking whatever is the autoimmune issue- for us our hair/scalp. After the initial strict diet you can add in slowly the things you miss to see if you get a reaction and if you do you know you can't eat that. It highly recommends becoming gluten free/ grain free permanently.
I'm like Day 3. Feeling tired and have a constant headache. That's expected. I'm willing to try this instead of taking another pill or a needle in the head! :)
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