Dear HS patient about to start an anti-TNF therapy,
I’m writing this letter to you in regard to HS and what you can expect from taking
an anti-TNF treatment, which is also called a biologic. I’m currently taking Humira
for my disease. Let there be no confusion. It is a disease and not a walk in the
park either. It will change you. It will change everything about you. Most
importantly though, do not let it get the best of you. You’re an amazing person
and always stay positive, even in the face of major pain and constant
maintenance.
When I first started on Humira, it was told to me by the doctor that it was the
only medicine that could help “manage” my disease and that my condition was
severe. I was hoping for mild and just beginning. You know, starting at one and
working my way up, like I had more time to get used to it. Nope. Severe out of the
gate. So, I wish I could tell you how taking a biologic compares to other types of
treatments, but I never got other treatments, so I can’t really say. Though, I can
say that antibiotics don’t work, and compression socks are your best friend for
pain relief in your legs. That was one thing I definitely figured out early and feel
the need to share. See, the biggest and deepest place that started my journey to
diagnosis began with my left ankle area. It was then that I found out what this
disease was and that ultimately a dermatologist would have to tell me what to do
over wound care.
Once I began treatment, I had a few emotions running through me for sure. For
one, I was not even a little thrilled about the fact that it was an injection. I can’t
stand needles, even though I have tattoos. Weird, right? Anyways, I was kind of
freaked out about that, naturally, and then once I started, it wasn’t too bad. I was
lucky to have a friend with me who I joked around with, asking her if she was mad
at me and wanted to stab me that day. Dark humor, I know, but it felt right
considering the diagnosis. There was a small part of me that felt hopeless in the
face of it all. I didn’t want to go through all that comes with this disease or the
shots or the totally depleted immune system. What I didn’t know at that time was
that it would also ruin clothes, making it almost impossible to wear them, and
goodbye social life. So, yeah, I was a bit emotional.
I wasn’t sure what to expect when I started using Humira. For some time, I didn’t
even think it was doing anything. I actually tested my theory, not taking it for like
a month. The HS flared up something awful during those times. So, it did help.
Not much, but the difference was certainly noticeable. Despite that, I need to tell
you that you shouldn’t think of any medicines you try as a miracle drug or a
potential fix all or cure. There’s no such thing. Not yet anyways. Don’t expect it to
remove the dark spots under your skin or the red marks or the lumps. Don’t
expect it to dull the pain. Definitely don’t expect it to keep the building sores from
filling and draining constantly. That’s not what it’s for. It just slows the disease
down a tiny bit. It’s like that saying, putting a band-aid on a bullet hole. It’s not
going to take care of the problem or even cover it completely. It will, however,
keep a tiny bit of the damage from coming out as quickly as it would otherwise.
In closing, stay positive. Despite all the challenges and changes, make sure you
have someone to talk to and someone to help you if you can. Your support
network will be very important, even if they’re not able to be around you as often
as you’d like. Mine is completely gone. But, you’re not me. You have options.
Please take care and good luck.
Chris Bryant