Nothing Is Worse than Nothing
I watched as the woman hobbled toward the elevator lobby. Even though she was obviously at least a decade younger than me, she was using a cane, limped heavily and didn’t look like she could straighten up. Her hands were swollen and knobby with some of the fingers turning in strange directions. I held the elevator doors for her and when she asked me to push the button for the fourth floor, I knew she was headed to the same rheumatologist I use. (There aren’t a lot of other doctors on that floor that might apply to her.)
She was a talker and we (or rather she) talked all the way up to the fourth floor, down the hallway and as we walked into the doctor’s office. Sure enough, she was scheduled for her infusion, just as I was. Once we both got checked in, she settled into the infusion chair next to mine (still talking).
Even though my infusion only takes 30 minutes, I found out more about her in that short period of time than I know about some of my friends that I’ve known for decades.
Two significant facts came out of that conversation. The first was that she was diagnosed a year after I was, although her disease state was clearly far more advanced than mine. And although RA affects us all differently, the primary difference was due to the second fact I learned: she had decided she didn’t want to be “on all those drugs” when she was diagnosed. Because of her aversion, she really hadn’t pursued any kind of treatment until she was so disabled by RA that she could no longer work.
She looked at me and said, as sincerely as I’ve ever heard anyone say anything, “I wish I knew then what I know now. The worst thing you can do for RA is nothing.”
This sentiment was recently echoed by a prominent rheumatologist who was on the same speakers’ panel I was. During his remarks he stated that he tells his patients that RA is a serious disease and it takes a serious treatment plan to address it.
I read about a lot of fears from patients about the potential side effects of drugs to treat RA and the fact that these treatments are usually used long-term does nothing to calm those fears. But what I think we need to hear more about is the understanding of the results of NOT treating RA. In addition to all the systemic issues RA can cause such as increased cardiovascular risk, the joint damage can be permanent. Like my new friend in the infusion chair, you can’t just ignore treatment then expect it to “fix” everything that’s gone wrong. RA is not like a rash that, if it doesn’t clear up on its own, you can eventually put some cream on it and everything will be as good as new. There are a number of statistics on the subject, but according to the National Institute of Health, within 2 years of disease onset, approximately 20% of patients are work disabled, and almost half are unable to work after 10 years.1
I’m not trying to tell you what treatment plan is right for you. I am on a biologic and methotrexate – two very powerful drugs. And I’m doing well. I like Western medicine because I like all the science behind it. I like being able to look at the data and the outcomes and the side effects that are discovered during testing. I also like being confident that my rheumatologist has experience with these drugs because she prescribes these same drugs for other patients and knows what those outcomes have been. There are other people that follow a more natural approach and many people that combine pharmaceuticals with a healthy lifestyle and anti-inflammatory diet. I respect anything that works and I think treatment plans should be personalized.
But if you have RA – do something to treat it – and do it with a good rheumatologist. Even if you go the all-natural route, you need to have regular blood tests and imaging to see whether or not the disease is responding to whatever treatment you feel is right for you.
To me, about the only thing worse than having RA is having RA and not treating it.
Have you managed RA fatigue better than you used to?