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Another step in my journey of fighting auto-immune related diseases
Hello everyone. I was diagnosed yesterday with Alopecia Areata and am trying to come to grips with this new auto-immune disease. Auto-immune diseases are not new to me since I was diagnosed with Hashimoto's over 14 years ago, then a few years later diagnosed with another auto-immune disease- celiacs, and now I have Alopecia to add to my list. Through my years of research, I had concluded that one auto-immune disease leads to another, and so on. This is particularly true with Hashimoto's. I have to say though, that this diagnosis devasted me. I spent all night crying and am now trying to mentally prepare for what may come.
My Alopecia came out of nowhere. Literally, one week I had no bald spots and the next week I had two quarter spots not yet connected. When I went to the dermatologist, I told him, "please tell me it is not alopecia." Of couse, that is exactly what he told me. Since I already have 2 auto-immune diseases it was not surprising that I have another; however, I was hoping because of my dietary changes that it would curb anymore immune system flare ups. Hashimoto's has made losing weight very difficult, and also brought on a variety of other health issues. However, I had managed through seeing a functional doctor to lose 25 lbs for the first time in 14 years and actually start to feel good again. However, life had another plan for me and is not yet done with me and decided to throw me Alopecia.
I have some questions with this disease. Does alopecia areata always get worse and progress? Does anyone know of anyone who hasn't lost a lot of hair? Does the steroid drops help? Do they cause you to gain weight? Also, I am looking for support groups in Michigan and am trying to get ahead of this and have a plan in place of where to purchase a custom, real-hair wig.
The past couple days have been an emotional rollercoaster for me, but I have an awesome husband and family who support me. Any advice will be helpful.
Replies to This Discussion
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Permalink Reply by Karaholly on
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Hello! I'm so sorry to hear about your diagnosis, as well as your other on going problems! My aa started when I was 27, I am now 33. AA doesn't always get worse and progress. A lot of people will have it and it will pass and come and go randomly throughout their lives. Mine started and had gotten worse in the beginning. The worst for me was the first year, (I am assuming it was all the extra stress added to my hair already falling out that did NOT help!!.) I have been getting the injections for the last 5 years. The injections seem to help sometimes, but not always. It seems to slow the hair loss but not stop it. They do not make you gain any weight. The injections aren't too painful, it depends on where you're getting them. Some derms will have a topical numbing cream that you can put on your scalp prior to the injections, but if they don't it's not too bad. I get injections every 4 weeks, sometimes she will have me go in every 2 if it's getting really bad. I also had tried squaric acid treatment. They burned the inside of my arm with 2% squaric acid and had it sit for a couple days. From then on, I applied starting with .01% acid and worked my way up to 1%. The problem with the acid is, 1. you need to have bald spots to use it, 2. it burrrrrns... It helped me more than the injections did, but you pay the price with the burning. It's manageable with the other medication they give you to help stop the burn, just make sure to keep it with you! I also took xeljanz.. i do not know if you will be able to take it because it has a chance of surpressing your immunity, and it sounds like yours is already compromised... but you should ask your dr about it. it's not currently approved so it's hard to get, and expensive. i was able to get it for free and it made all my hair grow back. I got it through xelsource, i had to appeal my insurance denying it twice, and have my dr recommend it for me and write a letter explaining why it would benefit me. I never experienced any side effects from it, but i started it while i was otherwise from aa, really healthy. I stopped it because i am pregnant, and after 3 months of not taking it my hair started to come out again.
This disease is terrible! I'm glad you're on here, there are so many of us all over the world dealign with this, it has been really helpful even just reading other people stories. It sounds silly, but i have met some people through instagram who advocate for AA, and they really make you feel not so alone! Keep your head up! Fingers crossed yours is one of those that goes away on its own, but if not, i promise you that it GETS BETTER!!!!!
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Hello Karaholly. Thank you for replying to my post. I appreciate your sharing your story with me and what you have been doing to combat AA. I am sorry to hear that your hair started falling out again, but want to congratulate you on your pregnancy.
I am very glad I found an online community where people know what you are going through and we can encourage and support each other.
If I may ask, what have you decided to do about your hair? I have already started to call around to get a plan together in case I really start to lose a lot or it gets too thin. I am thinking about going the wig route if needed, but want to find one that looks real and you can't tell.
What kind of injections do you get? Is it the PRP? If so would you suggest I get them to keep it from getting worse? Sorry about all of the questions, I am just so lost right now and trying to find my way with AA.
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Hi Cybergirl, sorry you're feeling lost. There are days when it would consume me.. It took me a long time to be ok with it, but there are some days that I still feel totally overcome by it. Initially I cut my hair shorter as well as wore wigs. When it got really bad I said F it and I just shaved it. It sounds really scary, but it was so liberating to no longer have to worry about it. I'm not encouraging you to take the same route I did, but it really helped me. I let it grow out when my head had less and less bald patches and more of a buzz cut. I now can wear my hair in a messy bun, it always looks like I took 30 seconds to shake my head and throw my hair up, but it is a very precise messy bun lol. I also use dark brown eye shadow or color WOW root cover up (any powdery root cover up at a makeup store will do. i got mine from ULTA). I have really blonde hair, but the blonde cover up doesn't blend in as well with my scalp. It's a cheap easy fix. I rub it all over my bald spots especailly around my hair line. i blend it in with the hair around it as well and pull the longer parts of my hair over the spots and pin it with bobby pins.
With wigs I got mine from a local shop near me. Mine didn't look super real tho. There are wigs now that you can wear at the gym, surfing, water sports, and they don't come off! There is probably a really good forum on here that can point you in that direction. You should check in with your insurance, sometimes they will cover your wig!! (that ish is expensive!) I can check with some of the girls I have met online that have purchased wigs, and get their thoughts on the ones they liked best!
I am getting intralesional corticosteroid injections. I would suggest getting them now, they take about 7 days to "work." It's definitely worth a try! My Dr. also had previously put me on prednisone. My body didn't react well to it, I was extremely anxious. I guess it is a very common drug to give when someone is having a big AA episode and it works relatively quickly. Most people don't have the reaction to it that I did. I found if I took it earlier in the day it wasn't so bad. I suffered from anxiety before my AA started and the prednisone made it worse for me unfortunately.
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Permalink Reply by Alo-mom on
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Hello from a former Michigander. First you need to contact the National Alopecia Areata Foundation and they can provide so much information about research, conferences, clinical trials etc... They are a very good resource. Next, I agree with the above KaraHolly that his site can be very helpful but it takes a village to help those with alopecia move forward. It was my daughter that developed Alopecia Universalis at 22 years old. She lost all of her amazing long brown wavy hair in 4 months. During that time I thought I was going to lose my mind. You are smart to start thinking about how you want to approach your hair now. Hey if it comes back then that would be great, but if it proceeds without you being proactive rather then reactive you may struggle a bit more. The thing with Alopecia you just do not know which way it is going to go. I remember my boss from years ago developed alopecia and lost a bit of hair but then it all returned. At the time I did not even know what Alopecia was. Sad to say my daughter did not have that same luck. OK, that being said, she made it clear that she was going to wear a wig and that is when I jumped into action. I actually went to China to learn more about wigs and where and how they were constructed. I had made too many mistakes early on and learned what it takes to be a good quality human hair wig. I am a phone support person for the National Alopecia Areata foundation and would be glad to give you all the items you need to know before you make that purchase. Message me and I will be glad to give you as much information you would like to make this process easier for you. Let me say this, my daughter is my hero and she has not let Alopecia take control of her life. She has a wonderful career, friends that love her and getting married next month to the man of her dreams. Again, if you contact NAAF they will give you information on a Michigan Support group, you will meet some wonderful people that can help you navigate the alopecia road.
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Thank you so much for responding to me. Your response encouraged me very much and brought tears to my eyes about your daughters struggle with Alopecia. I have sent you a friend request and would gladly accept any information you can provide. I am lost when it comes to wigs, but want something, if the time comes that doesn't look like a wig. Thank you once again! This online community is a lifeline.
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Pleased to hear you have a supporting family. I have Alopecia Universalizes. Which means NO hair what so ever. My first time was when I was 35, due to great stress. It stayed gone for 10 years. Then all came back and stayed for 20 years, until my mother died in 2010. 6 months later it all fell out and is still gone. Like you said one leads to another auto immune episode. A year ago I was diagnosed with Bellous Pemfagoid (that is not the correct spelling). It's a blistering skin disease very itchy. Very rare. Took time for the docs to figure out what was going on. After months of treatment, predisone, Aveno soaks, creams and anitbiotics I got over it, which surprised the doctor. However, now, I've got something going on with my face. Blisters and sores. Doctor said BP usually doesn't affect the face. I made an appointment at Mayo Clinic with a doctor who specializes in BP. I hate this. It's like why me? Anyway that's my story. As far as advice, I have none. Docs don't know that much about it and there is no treatment. Steroids help but one has to be on massive amounts and you can't be on that for long periods. I take it to supress the itching. Good luck.
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I am so sorry Pamela to hear about your struggle with your auto-immune diseases. They definitely reek havoc on our bodies and immune systems. This really took me by surprise because through dietary changes and eliminating trigger foods I was able to drastically reduced the antibodies produced by my body to attack my thyroid. For the first time in years, I have felt great and still do actually, which is why this took me by surprise. However, I have struggled with my hormones since I am pre-menopausal and have been battling those symptoms and have been going to school for my Masters, all which could have contributed to this. Whatever the case I have no choice but to move forward. I woke-up today and thanked God for the hair I have left and the health I have.
I have no intentions of letting this take over my life and am making an appointment for a quality hair topper piece, and when the times comes, I will get a custom wig that may look better than my real hair. I also took another food sensitive test and once I get the results will eliminate everything that showed up to reduce inflammation in my body. I know this works because my husband had severe eczema and it has went away by changing the way he eats, along with supplementation.
I am so sorry about your struggles and know you are not alone. Reach out to me anytime and thank you for responding.
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