Alopecia World
www.alopeciaworld.com
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
-
Permalink Reply by AnnieMay on
-
Hi Jess
I had much the same experience. I started losing my eyebrows and spots in front of my ears but the first dermatologist said it was probably age related, gave me rogaine and sent me on my way. I found a dr that specializes in hair loss on my own and she immediately suspected that it was FAA. I did have a biopsy to confirm the diagnosis and I'm actually glad I did. Even though it was absolutely devastating I think I needed that confirmation to move forward.
The only thing my dr has prescribed at this point is a topical steroid lotion so I can't speak to anything else. Glad you find this site too. No one really understands this awful disease unless you're going through it yourself so its so nice to connect with all of the very supportive women here.
-
-
-
Thanks for responding, AnnieMay. How has the topical steroid been working for you? Have you found it to help with the burning/itching; what about progression?
-
-
-
Hi again Jess
The first one she gave me is called Betamethasone Dipronpionate to use once a day for 6 weeks. When I used it I felt a lot of burning but I kept going. I seem to have itching and a tingling feeling all over so I can't say that it really helped with that. I actually feel like my scalp is more sensitive since I started using it especially in the sun. But it also might just be the FAA.
And I was sure that it had progressed and I was losing more but when I went in for my dr appt she said it hadn't since the last appt and things seemed stable for now. She emphasized "for now" But I have definitely seen changes in my skin along my temples which appears rough and of course I have the very shiny forehead. Such a bummer and so not fair.
I think once you've been diagnosed it's hard not to look in the mirror and worry and monitor this stupid condition everyday. I am so self conscious now and it's hard not knowing how much worse it will get. I am going to get my eyebrows micro bladed and I know that will help.
Sorry to vent but I'm having a bad day. Somehow we need to not let this get the best of us!
-
-
-
Oh, don't apologize. I understand. I, too, have had skin changes along with FFA. First it was rosacea, but I also now have the rough texture around my temples. Now that I realize what it all is, I can look back over the past couple years and remember when I first noticed my changes in my skin and my eyebrows thinning. I kept thinking, "this can't be a coincidence that this is happening at the same time." How I wish I would have found the right research and/or doctor earlier so that I could have had a chance (even a small one) at saving some of my brows and preventing the spread to my hairline.
I totally understand about monitoring things closely as well. For the past year-and-a-half, I had actually been documenting the changes by taking selfies from various angles on a regular basis. I literally had hundreds of pictures showing my eyebrows in different stages of loss and skin in various states of inflammation. I had just started taking pictures of my hair line not long ago, but I lost my phone a couple weeks ago, along with all the pictures. In some ways, I feel it is for the best because it was getting to a point where taking new pictures and comparing them to old ones so often was feeling almost obsessive. I think you're right, it is not knowing how much worse it will get that makes it so hard!
I've also thought about getting my brows microbladed. I feel like I do an okay job drawing them on, but boy is it a pain. And, you always have to worry about them coming off. I fear getting caught in the rain or sweating too much and going around half the day with a half-missing eyebrow! Oddly, though, I actually get compliments on my brows now. It seems that drawing them on is pretty trendy right now, so people just assume I'm following along. If only they knew, haha.
-
-
-
Regarding Rosacea, 1.5 years before I was diagnosed with FFA, a dermtologist told me I had the beginnings of Rosacea. She also told me that photo facials takes it away.
Several years before, I did photo facials on my face, neck, chest, back and hands. The cost can be around $350 a visit and you have to go back about 3 or 4 times. It's an amazing process. I'm 70, so I had a lot of sun damage. My neck was red, spots on my face, chest and back. All gone. The age spots on my hands. All gone. So, now, I guess I'll be going back for Rosasea. -
-
-
Was that an IPL photo facial laser treatment? My skin has changed so much with FFA. I feel like I've aged 10 years. Would it help that? I feel like some people think it might cause the FFA to become active?
-
-
-
I don't know what IPL means. Boy that's scared that I might have done it to myself. I don't know if it will help, you should consult a plastic surgery doctor. I went to one of those for the photo facials.
-
-
-
I think IPL stands for "intense pulsed light" and is the technology behind photo facials.
That's awesome you had good results, Ellen. I have seen some before and afters and they can be pretty impressive. I have also read, like your doctor said, that it can help Rosacea. Of course, I've also seen some horrific results of people getting burned or saying that it made their Rosacea flair and ruined their skin. It seems for every treatment there is, you can find horror stories, and they always make me reluctant. I am giving significant thought to it, though. I think if it gets worse, and I suspect it will, I'll probably give it a go. I'd love to hear about your results after you have it done again.
-
-
-
My doctor has told me that NO topical treatment works. We have an autoimmune disease where our cells are attacking our hair follicles and the only way to stop it it to attack the cell internally.
Additionally, he tells me that the redness we see on our hairline is our follicles dying. They will never grow hair again. Never.
If anyone has different information, please let me know.
Ellen -
-
-
Hey Ellen,
Take a look at this case study (Donovan, 2015). It documents someone who had significant regrowth after taking Finasteride (there are pictures). It's only one person, but it gives me a little hope.
Also, I made a previous post and attached an article that reviewed a lot of the studies that have been published. It showed that the majority of women treated with either Finasteride or Dutasteride had either "improvement" or "stabilization." They don't really define what "improvement" is, though. I wonder if that is regrowth or if skin atrophy got better?
I'm additionally attaching another study (Donovan et al., 2010) that showed eyebrow regrowth following injections of what I think were steroids of some sort.
Jess
- Attachments:
-
-
-
Thank you for the articles. Some things to ponder.
Boy did I have a reaction today. Really red hairline, red itchy rash on my back and my scalp itch was insatiable!
Sometimes I think I should just shave my head, but that won't stop the ravaging of my hair folicules.
Ellen -
© 2024 Created by Alopecia World.
Powered by
