Humira was approved by the FDA for use in patients with Rheumatoid Arthritis in 2002. It was also the first fully human monoclonal antibody approved by the FDA (fancy words, right? in short it just means it was the first of it’s kind). Even Remicade, the first anti-TNF drug approved for use in the United States, was not available until 1998. 17 years is the longest that anyone can possibly have been on this drug (and 21 years for any variety of TNF blocker)- but this is a drug that I will likely have to be on for the rest of my life.
It’s actually a really terrifying thought, and something that really bothered me when I decided to start treatment. What are the long-term effects of these types of drugs on my body? I can find plenty of examples of people who have happily been on a TNF blocker for 5 or maybe 7 years with no major issues- but I’m 27 years old. I’ve got much more than 5-7 years left in my life.
Make no mistake- I am incredibly impressed by, and grateful for, medical advances over the last 20 years. They have given me the drug that has subsided my symptoms and allowed me to continue living my best life, but it’s still scary. The unknown of the future is scary.
But the unknown of the future, and the promise of the past, also make me hopeful. In 20 years there have been incredible developments in treatment of AS and other forms of inflammatory arthritis, so I can only imagine what is possible in the next 20 years. Maybe they’ll find a cure. Maybe by the time I have kids and they reach the age of AS onset, I won’t have to be so terrified of them inheriting my disease.
The unfortunate trend that accompanies this incredible progress is the decline in the number of specialized doctors who exist, the number of rheumatologists who are able to diagnose these diseases and prescribe these new treatments. How can we change that?
With a growing shortage of rheumatologists the importance of AS knowledge in other fields and specialties is ever growing. Two years before I was diagnosed with AS I went to my primary care physician with complaints of hip and lower back pain. If you google AS symptoms I might as well have just read her the list, but she had no idea what could have been wrong. The frustration left me sitting around in pain for a year before a weird string or medical events started that led me to a rheumatologist. Had my primary care doctor been more informed, and known the primary signs of AS, I could have been diagnosed years earlier.
My point is this: bringing awareness to such a common disease is incredibly important to the potential for a cure, to supplement the impressive research and development going into medications, and for the future of others facing the same thing. I’m still working on figuring out the best way to become a strong advocate for this disease.
