My Treatment Journey

There are certain alopecia memories that are engrained in my brain. It had been a couple weeks of my hair falling out by the handful. I was denying that this was alopecia and believing it had to be something else that could be cured with a pill. I was realizing my arm hair had disappeared and finally admitting that yes this probably was my alopecia taking a terrible turn for the worse. I sat in my work cafeteria early one morning crying to my dermatologist’s nurse. I was in a panic and didn’t know what the hell was happening or how to stop it. Dr. Norris specializes in hair loss and he is not easy to schedule with. Typically, his appointments are booked a month + in advance, but I was frantic and she knew it. Somehow, I got insanely lucky and there was a cancellation this very week to fit me in. I got to the office a Thursday morning before work. I was wearing a tan and green striped sweater from Kohls. My stomach had 1 million knots in it. Although my hair was falling fast, it also had a weird buzz cut type feel to it underneath. It made me wonder if my hair could also be growing back? Please God, say it is growing back. The resident walked in, and I explained what was going on. I couldn’t finish my sentences without tears escaping. The resident looked at my hair and noticed the fuzz also. It was his theory that my hair was also growing back. He suggested I DO NOTHING and just let it run its course. LMFAO. I was in shock. How could he say DO NOTHING? He has no suggestions? No treatment plan? No nothing????? I needed Dr. Norris to come in ASAP. I wanted this resident gone from the room. I hated him. Dr. Norris came in and confirmed my worst suspicions. I was having a massive alopecia flare up. The fuzz I was feeling on my head was not regrowth, it was actually my hair breaking off, and I could expect that fuzz to possibly fall to. We were going to take action and start a treatment plan to get my immune system to calm the fuck down. Steroid injections (which had worked in the past) were no longer an option. With this level of loss, it would be insane to inject my head a billion times, and too many could cause my skin to thin out. There were no cures for alopecia, but there were experimental treatments. That is what we decided to do. He prescribed me prednisone and methrotrexate. I left the office scared, frustrated, tear soaked and alone. My treatment journey was starting.

When alopecia makes you look like Skrillex.

I was so desperate for my hair to grow back that I was willing to blindly pump any amount of chemical into my body to make it stop. Methotrexate is a type of chemotherapy when taken in high doses. My dosage was low and was not considered chemo. When combined with folic acid, it had some success with alopecia sufferers. I took this medication weekly. Once every Friday. I chose Friday because one of the side effects is that it can cause extreme fatigue for the 24 hours after taking it. That it did. It kicked my ass. However, the fatigue didn’t end for me after 24 hours. It carried on through the week. I felt tired and I felt weak all the time. I was an endurance runner who was used to running half marathons like it was nothing. Now I was struggling to even run 2 miles without stopping. I cared, but I didn’t care. I just wanted my hair back and wanted to push through until I got it.
You may have heard me refer to prednisone as the devil drug in an earlier blog. I stand by that notion. We started the pred at a higher dose to quickly stop the inflammation in my body and slow down the loss. At first it somewhat worked. I was tapered off and immediately the rapid loss started again. Back on pred I went. Everyday popping this devil drug that made me hungry, made me moody, made me hate everyone and everything, made me bloated, made me gain weight. The side effects were endless.
9 months into taking pred, I couldn’t do it anymore. I felt too unstable and all of the hair on my head was gone anyways. I talked to Dr. Norris and we agreed that we should go a new route. Goodbye prednisone, hello Vytorin. Vytorin is a cholesterol drug, but there are studies with alopecia patients who have experienced regrowth while taking it. The thing I learned about my body during this process is that I am extremely sensitive to medications. If there are side effects, I will likely experience them. My misery continued. The exhaustion I felt by taking methotrexate each week seemed to only increase with the Vytorin. I did not feel good ever. I felt weak, I had migraines almost everyday, I was mentally drained, and my hair was not growing back. I continued on this path for another 8ish months. At this point, the only hair I had left was my eyelashes. I finally decided it was no longer worth it.
At my final appointment with Dr. Norris I explained how I felt. He completely understood. He explained that each person’s body responds so differently to treatment. His previous patient had seen significant regrowth taking the prednisone/methotrexate combo with no side effects, and I saw no regrowth with all of the side effects. I cried in his hair clinic one final time before heading home to throw in the towel.
I will always be thankful for Dr. Norris. He never judged, he never pressured me, he was always understanding. He always took all the time in the world to answer my 85 million questions, and he wanted my regrowth as badly as I did.
After that experience, I’ve made a decision that I will never pop a pill again to get my hair back. I have no judgement against others who do, but it is not the right option for me. Its not worth it to fill my body with chemicals just for hair. I don’t want to live with awful side effects for the rest of my life. I don’t want to risk an even more serious health problem by taking these medications long term. So, I’ve just decided to embrace this little bald body, rock the shit out of my wigs, and just keep on keeping on with this crazy ass disease.

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