The Potential Reward Was Worth The Risk: My Journey With AS Treatment
Step 1: Work with 15 different doctors to finally get answers and put a name to the disease that has caused you excruciating pain for months (or years).
Step 2: Read about the different treatment options for your disease and probably start to panic again, because the side effects include things like a compromised immune system, heightened risk of infection, headaches, nausea, fatigue, fever, hair loss, liver damage, and the list goes on…
Step 3: Weigh the pros and cons of the different options you have and try your best to make the right decision.
When I was first diagnosed with AS I was so relieved to finally have an explanation for the crazy pain that had been severely impacting my life. My new rheumatologist sent me home with pamphlets for different medication options, and scheduled a one-week follow-up to discuss them. He recommended I take some time to read and do my own research, and come in with ideas and questions so we could figure out a path forward.
I quickly became overwhelmed
Once I started looking into the different options he gave, I was quickly overwhelmed and anxious. As someone who dealt with iritis because of my AS, I also called to get advice from my ophthalmologist about which medication to start. My rheumatologist recommended Enbrel, but my ophthalmologist felt strongly about Humira (better for preventing iritis, and my eyes already had some permanent scar tissue…). With their advice in mind and my own countless hours of research done, I decided that I wanted to begin Humira treatments.
Treated for TB?
If you’ve ever seen the commercials for a drug that is a TNF inhibitor (and there’s plenty of them) you’ll hear at the end something along the lines of “…have your doctor test you for tuberculosis before beginning treatment.” Super simple- I went in and had a blood sample taken for testing, and as long as it came back negative, I was all set to start treatments. The twist for me came when my blood test came back positive for latent tuberculosis. I was asked if I had ever worked in a prison, hospital, or 3rd world country where I could have picked it up. The answer was no to all of the above, but since Humira can essentially act as a catalyst for TB in your system, I had to be treated before I could begin.
I was registered with the CDC as a TB patient, and started on a daily medication that I would have to take for 6 months. The medication is especially harsh on the liver, so I was also instructed not to drink alcohol, or take certain other medications (like ibuprofen and antihistamines) while undergoing treatment. I was also going in to have blood work done every few weeks to make sure my body was tolerating the medicine. Meanwhile, my AS symptoms were still in full force, and I was experiencing pain flares that I couldn’t take NSAIDs to help relieve.
The changes brought anxiety
At this point, I was also starting to experience chest tightness, faint spells, sweating, and fatigue, and I was convinced something new was wrong with me on top of AS and TB. A trip to urgent care and a barrage of tests later and the doctors recommended I see a therapist, as I was likely experiencing severe anxiety (and reasonably so- I’d been hit with A LOT of health information in a very short amount of time). I found a therapist that I felt really comfortable with, and began a continuing journey to learning how to deal with anxiety that had been sparked by my AS diagnosis.
At home injections
After a LONG 6 months, I was finally cleared to start Humira. I met with a nurse who had a fake injection pen to walk me through how to give myself the injections at home. Thankfully, Abbvie, the company who creates Humira, also sent one of their nurses to my house for my first injection, to make sure I felt comfortable and confident doing it on my own.
Injecting yourself isn’t easy, and it took a long time for it to become part of my routine, and for me not to psych myself out before each shot. The injection itself felt like being stung by a wasp, and more often than not I was left with a nasty injection site bruise. Slowly but surely, I adapted, and thankfully they have recently come out with the citrate-free version of the drug that is almost painless to inject. I’ve been doing this now every other week for 3 years, and my “injection Sunday” is still hard.
I've been fortunate, but I wonder how it will last
I’ve been fortunate, and responded well to the medication. Over the last year I’ve had an increase in back spasms, and arthritic pain in my elbows. For now, my back/hip pain and iritis are still in check, and the peripheral pains are manageable, so I’m not making any changes to my treatment. But I constantly wonder how long Humira will be successful for me. How many years will it work before I have to try something new? When that time does come, what if my body reacts poorly to new treatments, or I can’t find a drug that works to relieve the pain?
Chronic illness is scary, and the future is hugely uncertain. For me, taking on the risks associated with a biologic medication was worth it when the alternative was full-spinal fusion, or a life filled with medical limitations. I’m painfully aware that that may still be in my future, but prolonging the time that I can run, play sports, and live my life how I want to is worth the risk for me.
Do you use the word disability to describe your AS?