Because Dermatomyositis affects the skin, the scalp is often affected as well. The scalp, of course is skin, too. Severe itching, scaling, sores, and hair loss can occur. In addition, the scalp feels very tight and may also give a burning sensation and feel hot to the touch. It can start off as a little bit of itching and flaking, mimicking dandruff, but as it progresses, itching increases, and flaking becomes scaling. Scalp tightness and sores are the next to arrive (at least that is how it went with me). Lastly, the hair loss shows up. Now, what I am about to talk about is my personal experience with Dermatomyositis hair loss. I'm not complaining or acting like this led to complete baldness or anything to that effect, because, even though I experienced what I did, I still didn't lose all of my hair. And yes, it could have been far worse. My intent here, not just in this post, but in all of my DM posts, is to relay my experience and bring awareness to this disease and all of its effects.
Those that know me well, know that I've always had a very thick and full head of curly hair. I've struggled with tangles and frizz my whole life and at times, wished there wasn't so much hair on my head. You don't know what you've got til its gone, right? That's where I found myself in the Spring of 2021 when my hair started falling out rapidly. All I had to do was touch my head, and several strands would come out. Handfuls were coming out in the shower. When the loss initially started, I did not connect it with Dermatomyositis. Instead, I researched the shampoo and conditioner I was using at the time, and found that they had ingredients in them like parabens and sulfates that can cause hair loss, an irritated scalp, and itching - and I had all of that, so I just changed brands to something that didn't have the bad stuff in it. The hair loss kept progressing. By the time I saw my new Dermatologist in the Summer that year, I had switched brands 4 times out of desperation, but the hair loss had not slowed down and nothing had eased the itching, burning, scaling and sores. When this had started, my auto-immune treatment was Plaquenil, but in the Summer of 2021, I was switched to Methotrexate. I was told by both the Dermatologist and the Rheumatologist that Methotrexate does usually work well to fight the disease. And, if we can get the disease "knocked down" then the symptoms such as the rash and hair loss, should be reduced. So, I started on the Methotrexate as well as a course of Prednisone. I could tell after about 6 weeks that the treatment was working some, as my rashes and muscle fatigue had lightened up. But, my scalp symptoms were still present, and hair loss was still a problem. I did a little more research and found out that Methotrexte has a side effect of hair loss. So, the medication that is supposed to treat the diseases that are causing hair loss, can also cause hair loss. Hello lose/lose situation!
The below two pictures are my "before" and "after". The one on the left was taken in December 2019, just a few months before my Dermatomyositis diagnosis. The one one the right was taken November 3rd of this year. My hair was much more full and thick before this all started!
In these two pictures, the side of my head is shown. The one on the left is from 2013, many years ahead of all of this. The one on the right is from November of this year. My face is pretty involved with rash in this year's picture. I went through a really bad flare last month.
I began taking hair growth supplements/vitamins and trying topical scalp treatments like crazy. I was desperately trying to find anything that worked - or would even just slow it down, or stop the itch! My scalp felt very tight - as if a band was squeezing my head. It was red, hot, and the scaling and scabs were bad. I was was very worried and stressed that I was going to lose it all. Of course we all know stress and worry don't help anything! I could see my scalp in places I never really had before. Ponytail holders that usually only needed 2 wraps to be tight, now needed 4 wraps and were still a little loose. My hair now felt thin, which was very strange because in my life, I'd never known what thin hair was. I only needed a hand towel to dry my hair instead of a normal bath towel. This was really difficult physically and emotionally. I looked different - not necessarily in a way that people I met that hadn't known me before would see....but to me, and those close to me, the change was pretty clear. I'd lost roughly 50% of my hair. Before this period of hair loss, and even before the DM diagnosis, I was very self conscious, but, the hair loss kicked it to a whole new level. I was wearing hats everywhere. I used volumizing products to make my hair look more thick and full. Most recently, because the area above my ears is very thin, I started wearing wide cloth headbands to cover up some of the scalp exposure. I have them in numerous colors and patterns to go with anything I wear!
These pictures show examples of scalp redness, scaling and sores that I have had. These are all from the fall of this year.
When you're going through this, and you don't look or feel like yourself anymore, it takes a toll on you. I've gone through periods of withdrawal - where I don't want to go out, or be around people, because really, I felt like I looked like horrible and was embarrassed to be seen. I used to be really low maintenance - rarely ever wore makeup, hair usually in a ponytail, and I was good to go. Now, not only did I have to take all of the precautions to be covered from the sun, I'm having to wear makeup nearly all the time and do things to cover my head and/or make my hair look more full, all before even going to get groceries. And, even doing all of these things, I am still uncomfortable the majority of the time. Hair loss is difficult anyway, but, I feel like with women, its extra hard. So much value is put into your appearance these days. Going out in public, knowing I've lost so much hair, made my already self-conscious self, feel even worse. Combine that with the facial and neck rashes and redness, and I'd really just rather crawl in a hole and hide than be out in public or even around friends.
For about two years, I continued to have periods of major hair loss and my hair had been getting steadily thinner. I ran through many different hair growth vitamins, topical scalp treatments, shampoos and conditioners. I was getting frustrated when I did not see results with each new thing. But, persistence and will finally prevailed and earlier this year, I finally settled on a combination of things that stopped the hair loss and has gotten me on a path to regrowth. What I have found success with, and my current treatment for this, is Viviscal Women's hair vitamins, TGIN RepaiRx Strengthening Shampoo and Conditioner, and TGIN RepaiRx Anti-Breakage Serum. The combination of those four things is what is working for me. It may not work for everyone else experiencing DM related scalp issues and hair loss.
The regrowth over the last few months has been slow and small, but, I am thankful for it nonetheless because it means I am moving forward to the right side of this. I do still have occasional bouts of scalp issues - including itching, scaling and tightness, but I have learned how to manage it, and it doesn't progress into hair loss anymore (so far). The issues with my scalp caused by the DM are not completely gone, and they will probably never permanently go away unless this disease is cured. At least though, for now, I am on a better, more manageable path. Here's to continued progress!
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