The Immunosuppressant Tight Rope
It’s been a rough cold and flu season, and we haven’t even hit Thanksgiving yet. Throughout the fall, I’ve been sick more often than I’ve been well. In the late summer I experienced a flare that lasted several weeks. While my symptoms were tolerable on prednisone, as soon as I finished a dose pack the pain intensity immediately ramped back up. My rheumatologist reminded me there was still potential for the Plaquenil to reach maximum efficacy, as I’d only been on it for eight weeks. He also added Etodolac to the Orencia and Arava I’m also taking. I’m not sure whether the Etodolac or the additional weeks on Plaquenil did the trick, but my rheumatoid arthritis symptoms did quiet to manageable levels. However, while my RA is using its library voice, my sinuses continue to scream at me.
Throughout the fall, I’ve been developing upper respiratory illnesses that then turn into sinus infections. If I’m well for a few days, it isn’t long before I again suffer from the headaches, cough, congestion, and fatigue that accompany the next round of illness. Each time I go to the general practitioner, I’m told this is what’s to be expected while taking the immunosuppressants I’m on. At my most recent check-up with my rheumatologist, we had a more in-depth conversation, but I was basically told the same thing.
My rheumatologist told me the only way to treat an autoimmune condition is to quiet the immune system. While that’s good for my RA, and slows the progression of this degenerative disease, it’s bad news for my sinuses. After checking for inflammation and tenderness in my joints, he was considering increasing the dosage on my RA meds. However, he does view me as a whole person and not just a host for RA, so he asked what I thought. I told him that right now I’m in a tolerable, albeit uncomfortable, place. I’m not in intense pain from RA, and I’m not too sick to make it to work. Wary that increasing the dosage of my medications might make me even more susceptible to illness, I said I’d rather not go up on my meds.
Fortunately, my rheumatologist doesn’t just look at me as a conglomeration of symptoms, but rather as a person who is experiencing them. Instead of going up on my meds, he’s switching me from Orencia injections to Orencia infusions. He said that some people experience additional benefit from having the medication delivered straight to the blood stream. I’m grateful for my doctor, and I’m thankful that my voice counts. I also feel lucky that there are so many treatment options for us to choose from. However, I’m feeling nervous about how much of the cold and flu season still lies ahead, and what it’s going to be like trying to get through it.
We live in an exciting time for medicine. My great-grandfather, who is my only known ancestor with RA, could not have fathomed the variety of medications available to treat the disease that left his body unable to perform the farm work required to earn his living. In addition, there are many people who currently don’t have access to these drugs due to their high cost. I do feel fortunate to have treatment options that are fending off the progression of the disease, thereby reducing the likelihood of future surgeries or increased disability. That being said, I wish researchers could develop a medication that could tell my immune system to leave my joints alone, but keep it awake at its post in guarding against all the germs ready to take by body by siege.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?