For me, one of the more distressing side effects of having an autoimmune disease was my resulting hair loss. In fact, my hair loss was what really encouraged me to keep going to the doctor until I finally received a diagnosis of Crohn’s disease and Ankylosing Spondylitis. Known medically as “chronic telogen effluvium”, this is a condition where the hair sheds excessively. If you run your fingers through your hair, your fingers will be full of shed hair. Likewise, your hairbrush will fill up very quickly.
What’s different about telogen effluvium from traditional hair loss is there are no bald spots or receding hairline. The shedding is spread out over your whole scalp, so other people don’t necessarily notice it as much as you do. People would make comments to me like “But aren’t you someone that just naturally has thinner hair?” Also, with this condition there is new hair still growing in at a normal rate. If you had a man’s-style haircut, the hair loss would be completely undetectable. Usually your hair goes through a growth phase and then a shed phase. With telogen effluvium, the shed phase never turns off.
My “shedding phase” lasted for over four years before I was finally able to get it to stop. After years of shedding, my hair shortened from bust length to shoulder length. I could no longer wear it in a pony tail because the pony tail was so thin that it looked embarrassing. Eventually it got so thin that an elastic wouldn’t be able to hold it up even if I wanted to. I started wearing it up in hair clips that were meant for little girls. I noticed that worn up, with the hair hidden within the clip, the hairloss was less noticeable. I stopped wearing it down because over time the shedding made my hair take on a strange “mullet effect” that was not attractive.
The hairloss became very distressing and it was difficult to leave the house because I felt so ashamed of myself. I didn’t want to be seen by anyone. I came very close to just buying a wig or cutting it all off many times. When I went to the doctor, all they would tell me was to work on my stress levels, but this was not the answer. The stress was from my untreated autoimmune disease. When I looked up dermatologists that specialized in hairloss, they would screen me over the phone for telogen effluvium and then tell me there was nothing they could do for me.
You see, the problem with telogen effluvium is that it is just very different from traditional hairloss. I used Rogaine for Women religiously for a year straight and it made absolutely no difference. Save your money and do not buy any kind of hairloss products. I have tried them all and they will not help you. The only thing that will work is getting your autoimmune disease under control.
Back when my hair first started falling out, I had already been sick for a very long time. Getting an autoimmune disease diagnosed is about as difficult as getting a doctor to take your telogen effluvium seriously. They would test my nutritional levels in my blood and find that everything was fine and send me on my way. If they had tested my C-Reactive Protein and Red Blood Cell Sedimentation rate, then they would have seen that I had an autoimmune disease. I actually ended up not being diagnosed until I became so sick that I ended up being hospitalized for a week.
After my hospitalization I was put on Steroids and Remicade. Although these medications were an improvement, they did not help my symptoms 100% and my hair kept shedding. If you’ve done your research, you may have noticed that there’s some buzz on the internet that Xeljanz stops telogen effluvium. I asked my doctor if I could switch to Xeljanz, but she said no because although it’s approved for colitis, it is not approved for Crohn’s. She instead put me on Humira.
On Humira I noticed a drastic improvement in my symptoms and after about 4 months I noticed that my hair had stopped shedding. It’s starting to grow back, but I think realistically it’s probably going to take about two years to go back to normal. Right now my hair looks like I’m in the process of growing out bangs, which I can live with. I still wear my hair up most of the time, but I’ve started wearing it down again and have even done the occassional pony tail.
Some additional odd things I’ve noticed: I had always had curly hair, but when the telogen effluvium started happening my hair became very limp and almost straight. Once the shedding stopped, my hair became curly again. Another odd symptom was that my nails became brittle and I had a vertical indent in one of my nails that lasted for years. This has also gone away now that I’m on Humira. I can only guess that the inflammation was also attacking my hair and nails. According to my gastroenterologist, when you are that sick for that long, there are bound to be ripple effects throughout your body.
As you can imagine, I’m also very careful with my hair these days. Something that helped immediately was that I stopped combing my hair when it’s wet. Wet hair is weaker and more prone to breaking, so after getting out of the shower, I let my hair air-dry completely before letting a comb or brush touch it. I also don’t use a curling iron or blow dryer on my hair at all. I use a hair mask once per week. I WILL NEVER TAKE MY HAIR FOR GRANTED AGAIN!
If you’re reading this article, it’s probably because you suspect you have an autoimmune disease but it hasn’t been diagnosed yet, or you’ve been diagnosed but your disease is not being treated well enough. Unfortunately, in my experience I have found that you have to do a lot of your own research and be willing to be a tireless advocate for yourself. Again, insist on being tested for C-reactive protein, red blood cell sedimentation rate, and ANA if you are undiagnosed. If they refuse to do the se blood test, tell them that you want it recorded in your chart that you asked to have them done but they refused. If you’re already diagnosed, my advice is to switch to the best doctor you can get to, even if it means driving over an hour away. I am a big advocate of seeing a specialist within a University health system. An example of a University health system is Massachusetts General Hospital in Massachusetts and UVA Health here in Virginia. These doctors can get you on the right biologic that will actually work and get your hair to grow back.