Alopecia World
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Newly diagnosed, scared and overwhelmed, lots of questions
Hello Everyone,
This is the first discussion board I've ever joined so I apologize if this is not the appropriate place to post this. I'm 36, I was diagnosed with FFA about 1 1/2 weeks ago. I've been poking around the internet looking for information and I stumbled across this group. I have read through a lot of your stories and you are all so strong and positive, I'm really glad I found this group!
About 3 years or so ago I noticed a small patch of hair missing from the front center of my scalp. I didn't think it was a big deal so I never did anything about it. About 2 months ago I suddenly noticed that I was losing more hair in this area. I went to the doctor and had a biopsy done, it came back as scarring alopecia. They believe it is lichen planopilaris/FFA. When I left the doctor's office I was upset, but not as upset as I became the more I learned about this disease. Mainly, that it is rare, progressive, difficult to treat and without a cure.
Since my diagnosis I have wavered back and forth between sadness, panic, anger and despair. I haven't told many people, just my husband and immediate family. They have all been as supportive as they can be. Right now I am only missing a small patch of hair so it is pretty easy to cover with the rest of my hair, but knowing it will get worse is scary. I consider my hair my best feature, it thick, dark and spirally curly, and it is sort of my "signature". So I am trying to get used to the idea of that changing, but it is hard.
Anyhow, I have a Dr. appt this Wednesday to discuss treatment options. They had mentioned Plaquenil as well as treatment with an Xtrac laser. I know some of you have tried the Plaquenil with mixed results. Has anyone tried the Xtrac laser? Has anyone had any success with any homeopathic treatments, supplements or diet changes? Also, I noticed some of the hair follicles surrounding my patch of hair loss looking red and scaly. Does this mean I am about to lose more hair? Areas of my scalp on the sides and back of my head feel hot and slightly itchy but do not look enflamed at all. This is a new symptom in the past couple of days. I think stress may be making things worse? Is this also a sign of more hair loss to come? Thanks everyone: )
Replies to This Discussion
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Permalink Reply by PamW San Diego, CA, USA on
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Hi, April. You are pretty young to have FFA since it primarily attacks post menopausal women. However, it is a type of LLP. The earlier you catch the disease the better your chances of saving your hair. I don't know where you live in the US, but I urge you to become a member of CARF. It is free and they can refer you to a dermatologist who is experienced in treating citracricial alopecia. Stress makes things worse, so try not to focus on it. Be proactive, but get on with things. I wasted a lot of days worrying and fretting over my hair and I could have enjoyed life a little more. If you read over the posts, you will see that everyone is different, which makes this disease so tough. The nice thing about this group is that we know exactly what you are feeling - on your scalp and in your heart. I asked two doctors about diet and they said there is no conclusive evidence that being gluten, dairy or sugar free has an effect on the disease. However, if you ask people, some report that a paleo diet is helpful in terms of itching and scalp discomfort. The important thing is to control inflammation, so anything that reduces inflammation such as Tumeric have been helpful. Good luck to you.
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Permalink Reply by Debs on
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Hello April
A big welcome to you.
The ladies in this group are all very well informed, we are all over the world so you can get the benefit of advice we are receiving from dermatologists in different countries and you can know what your treatment options are. The plaquenil drug is one that is used to stop inflammation in many autoimmune conditions. I have been taking it since March, I am not sure if it is working for me but I know it has worked for others. Other options are the antibiotic doxycycline and steriod injections into the scalp. Your Doctors seem to be on top of this and I would definately try the plaquenil ASAP and see how it works out for you, if you find the inflammation does not stop you can move on to the doxycycline next (or vice versa). Catching the FFA so early is encourging because you have time on your side to find a treatment before you lose much hair. Good luck and please ask any questions you want, we all know how you feel. XXX
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Permalink Reply by April on
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Thanks, everyone. Debs, I would be interested to hear how the Plaquenil is working for you as time goes on. Pam, I've actually been on a gluten free diet for 6 years(I have Celiac disease), so I guess in my case gluten is not the issue, but I have wondered about other foods. I will look into the Paleo diet. Rebecca, I'm having a hard time with having little control over this as well. I keep feeling like I should be DOING SOMETHING about it constantly, but I can't do much until I see my doctor. So, I am going to try and relax ...I am leaving for vacation tomorrow with my husband and baby, something good to focus on. Going to try and have fun, not stress. Thanks again.
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Permalink Reply by ammie on
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April,
Our stories are quite similar. I too have lost a small patch of hair right in front where my widow's peak used to be. I have recently noticed thinning along my hairline near my sideburns. I went to a derm who said she tought I have alopecia areata but never did a biopsy.
I recently found out I was pregnant so I haven't sought out another doctor. I plan to do so after I have the baby and am interested in getting a biposy so I can know for sure this is what I have.
I too have thick spiral curls that I get a lot of compliments on. Despite the thinning I still have a big head of hair which is the reason I think doctors don't take me seriously when I point out my hairloss.
I live in fear of it getting worse. Everyday. -
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Ammie,
Definitely get the biopsy done if you can, it will give you piece of mind to know exactly what is going on with your hair. The PA at my derm's office initially thought I had Alopecia Areata as well, but the biopsy ruled that out. He was really surprised when my biopsy came back as scarring alopecia, since it so rare. He said he's only seen a few cases of it in the last 4-5 years. Hopefully you can find a doctor who understands a bit about this condition. My doctor knows some, but I honestly think I know more than he does about FFA! I am trying something called xtrac therapy right now. I have no idea if it will be effective at all, but I will let you know, since it is something that is safe during pregnancy. I think the worrying is the worse part of this, and the psychological effect it has. Not knowing what the future holds is so hard, but try not to worry (I know easier said than done). Congratulations on your pregnancy : )
April
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Thank you, April! I do need to request a biopsy. They will perform one if I request it right?
I can't remember what thread this is on but I read somewhere in this group a mention of low vitamin D. I too have been diagnosed with low vit D and would not be surprised if there is a connection. -
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Yes, I don't see why your doctor wouldn't do a biopsy if you are asking for it. Let us know how this turns out.
April -
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Hi April,
Is this the therapy you are referring to?
http://www.westerndermatology.com/treatments/xtrac.htm
Thanks!
Ammie -
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Annie, yes that is it. I have been to 5 treatments so far. I don't think we can really tell if it is working yet but I will keep you posted. My doctor also wants to try dome additional things like injections or rogaine, but I haven't decided if I want to go that route yet. Have you found out anything more about your hair loss?
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