My Journey to Humira (Part 1)
Last updated: January 2023
There is nothing in this world that I hate more than the sight of my own blood. Watching a gruesome scene on TV or seeing a client’s injuries are totally fine with me. But there is just something about my own blood that makes my stomach turn. On top of that, needles aren’t great for me either (when giving blood at the doctor’s office, I would have to turn away from the doctor so as to not see the needle going into my arm). So you can imagine just how thrilled I was when, two years ago, my doctor told me that she recommended I go on Humira, a medication that I would have to inject into myself weekly, to treat my HS.
This recommendation was not entirely a shock to me as I had tried a bunch of other medications in the hopes of finding something that would work for me for about two years. Now, after being on both Humira and spironolactone for the last two years, I have come to the conclusion that this combination is the best combination of medication for me (and my doctor thinks so too!). However, there was a lot of hesitancy surrounding the process of beginning Humira and actually doing the injections myself given my fear of my own blood.
When I was first diagnosed, I was given topical creams because the first doctor thought that my HS could be treated from the outside in. Topical creams did not really work for me, and while I still sometimes use them now in addition to internal medicine, they just did not seem to be strong enough to help treat the stage of HS I was at.
About a month or so after this, I was able to find a dermatologist who was an HS specialist, and he put me on an oral antibiotic. I was on this medication for about a month before we realized that it was not working, and so we switched to a different oral antibiotic. This antibiotic, in addition to not helping, came with searing headaches and dizziness. My doctor insisted that I stay on it for about a month or so to test out if it was really working. I tried to explain that the headaches and dizziness were severely impacting my ability to complete my homework and study for tests, but he did not seem to take my concerns into consideration. I ended up sticking through the month with the antibiotic, but just like the first one, it did not seem to prevent my flares.
More medications for my HS
I went back to the same doctor, unable to find another specialist who could fit me in for an appointment within a reasonable time frame. This time, he put me on two new oral antibiotics and told me that I needed to take both of them twice a day. Although I did not see much improvement over the first few weeks, I was happy to be free of the headaches and dizziness.
After a period of about another month or so, the medications started working. My flares became increasingly less frequent, and it became much easier to manage daily life and focus on my schoolwork. This went on for about 6 months until the medications slowly stopped working and my flares started to come back. The doctor increased the doses, but after a while, they too stopped working, leaving me with the feeling that nothing seemed to work.
Check out Part 2 of this series!
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