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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 just quit taking the drug. Last night. And I'm still itching. It probably takes a few days to get out of your system. I will start again in a few days to see if I get the itching again. I take a pill twice a day. When I reintroduce it to my body, I'll just take one pill a day. If it comes back, I don't know what I'll do.
The Dutasteride intrigues me though. I might ask my doctor for that.
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Permalink Reply by illustr8r on
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When I had a major flare a few months ago I started taking Benadryl. I itched all over and couldn't rest.
I know that sweating doesn't help this stuff. When I work out it can trigger my scalp. I have a "chill" towel that retains a cool temp that I put on my head and it gives some relief. You run it under cold water and ring it out. It's made with some sort of microfiber.
Also, if you have itchy skin besides your scalp Sarna lotion is a big help.
Hang in there! ((Hugs)) -
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Will we all get atrophy?! Those pictures are pretty shocking!
Is there a world-renown doctor who specializes in FFA.
Ellen
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I've wondered the same thing. From what I've gathered, it seems the disease is unpredictable. Some may have mild symptoms and slow progression, others may experience it as more severe. I do wonder how many people actually progress to the furthest stage, or if that's less common? I agree with you, also, that dealing with the hair is bad enough, but to add the skin, too?! C'mon. I have been very lucky most of my life and had a really nice complexion, even as a teenager. I used to get compliments pretty regularly, but, boy, it's been quite a long time now. Part of it could just be from getting older, but I really feel like my facial skin has changed a lot in just the past couple years. Like I mentioned in another post to you, I'm giving a lot of thought to the photo facials.
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The Plaquenil has given me too many reactions. Hives, itching (severe), lips peeling, etc. I'm going to the doctor tomorrow, so I will let you know if I come back with any new information.
I do remember he said that this disease can go into remission. One could only hope!
I will pray for all of you! My God still does miracles.
Ellen
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Hi Agneta,
I am so sorry to hear that this is having such a negative effect on you. I am still in the early stages, and while I've lost all of my brows and most of my "side burn" hairs, I still feel like most people don't notice anything.
Oh, but to watch my hairline recede slowly toward my ears and see my temples progressively get thinner is so anxiety provoking. I have been hoping for the best with the medication I'm on. However, I am also trying to mentally prepare for the worst. While this disease can take my hair, I know that letting it steal my happiness is on me (please don't take that as a negative judgment of how you're feeling). Most days are okay. I have a fairly busy life, and I try to stay focused on the present. But, there are times when I get caught up in the "what-ifs" and find myself with tears running down my face.
It is so easy for others to dismiss the effect this can have on one's psyche. I think one of my biggest fears is getting to the point where I start feeling ashamed of how I look. Just thinking of it now makes me tear up. I know that I don't want to spend my life missing out and feeling like I have something to hide. I'd like to think that if it does get really bad, I'll eventually get to a place where I can be open and honest about it with people. I think I would prefer that to always feeling like I'm about to be found out. But, getting there mentally is not going to be an easy feat. It is going to take digging deep and constantly reminding myself that my worth is not contingent upon my looks. Even I as I say that, though, I think to myself, "Everyone wants to feel attractive, don't they? I don't have to be gorgeous, but is it too much to ask to look "normal.""
This shit sucks.
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I know I'm preaching to the choir with all of you courageous people
The "what if's" are what give me the most anxiety. If I could stay where I am right now (even though I am beyond self conscious now) I could find a way to manage it. But the progressive and irreversible part of all of this as well as the bigger picture issues have taken the wind out of my sails. . .I have two daughters. Will I have to wear a wig to their weddings? I don't know how I could ever manage that in such a public way? Someone posted that their dermatologist said she has seen more tears shed about this than a skin cancer diagnosis. . Trying to keep my "secret" now is exhausting. The amount of time it takes every morning to just get out the door with certain shampoos, drying my hair in a certain way, filling in my eyebrows . I've never been good at any of that anyway! And then going through my day worrying about whether or not the wind might be blowing when I'm with a client. . I wish I could shave my head tomorrow but the reality is that I would look frightening with the other issues I have from FFA which is so unfair. Being 60 and a woman is hard enough. Honestly my husband has a receding hairline, he has varicous veins, but it doesn't matter? He gets up, takes a shower and he's out the door! Jealous. . .
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It is unfair, AnnieMay. I feel the same way-if I could just stay where I'm at, I'd be okay. But to know that it will likely get worse and have no idea when or how bad is very hard. I've read this stuff eventually burns out, but I've also read it can come and go. I am sure this is awful at any age, but being that I'm 34, I keep thinking I'm going to have to try to fend this off for at least 40 years or so. I don't know how likely that is or if it's possible. Given that I'm still fairly young, I worry there is plenty of time for this disease to progress to the fullest extent it can.
I know it isn't easy, but I hope that by the time your daughters marry, you have found a way to feel comfortable with yourself. It would be such a shame for this disease to rob you of the things that are truly beautiful in life. Imagine if this had struck one of your daughters. I can guess you wouldn't want to see them shrink away from the life they deserve, and you would still see their beauty and encourage them to do the same. Perhaps we should try to extend to ourselves the same compassion that we would offer to someone else.
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Hi Jess-I'm SO sorry that this has hit you so young. Not fair. I'm sure it's an earlier thread but are you taking any medications? And thank you for your thoughts. Yes my daughters are so supportive. I'm just more of a private person so the thought of being the mother of the bride in a wig is frightening! I'm sure I'll get through it all. I was also recently diagnosed with osteoporosis and some arthritis in my hands which has added to my "it's not fair" attitude. There seems to be a auto immune link so I'm going to go see a functional medicine dr to help me look at diet and what else I can do. It would honestly be easier for me if it wasn't affecting my skin as well. I'm going to look into having some photo facials done. And having my eyebrows micro bladed July 5th!
No fun getting older but trying to embrace it and move forward. Think good thoughts for you
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Thanks, AnnieMay. I am taking dutasteride, and using a topical cream called Elidel. It's supposed to suppress the immune system. I also use Rogaine.
It does seem like if you have one autoimmune disorder you're more likely to have others. Ugh. I've heard great things about microblading, though. Let us know how it goes!
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