Thursday, February 5, 2015

Infusion confusion

Hello, friends!

Based on recent evaluations, I started a new medication last week. Rituximab is a monoclonal antibody, an immunosuppressant that targets a protein on the surface of B lymphocytes, a type of white blood cell. In addition to organ transplant rejection, many diseases characterized by abnormal B cells can be treated with the drug, including leukemias, lymphomas, and autoimmune disorders. By destroying B cells, which sensitize the immune system to invaders, real or imagined, the medication should quiet my immune system, making me less prone to lupus flares. Theoretically, it should also slow the progress of my respiratory disease, which is essentially lung scarring due to chronic inflammation. However, disrupting an overactive immune system is a bit like taming a vicious guard dog. It no longer indiscriminately attacks all passersby, but it might let in the burglar it used to scare away. While the tradeoff for less inflammation includes greater infection susceptibility, both my pulmonologist and rheumatologist are attempting to keep the underlying cause of my lung condition stable during my possibly lengthy pre-transplant wait. My rheumatologist also initiated rituximab as a step toward reducing my steroid dose. Although my prednisone dose isn't especially high, higher doses are associated with surgical complications, poor wound healing, and osteoporosis. In anticipation of transplant surgery and long-term steroids post-operatively, reducing my overall steroid exposure now is almost guaranteed to be of benefit. Since rituximab can also be used as an immunosuppressant after transplant, it may be a head start on anti-rejection medications as well. 

Because rituximab is only administered intravenously, I spent last Monday at the UPMC outpatient infusion center. Six open cubicles form a “J” along the edge of small room, and a stream of patients flows through as treatments end and begin. A rituximab infusion often causes a mild reaction during and for a few days after the treatment, including headache, skin flushing, and fatigue. To mitigate those effects, the initial dose is typically administered over five to six hours. Most patients are premedicated with oral Tylenol as well as IV steroids and Benadryl. However, a steroid dose above twenty milligrams per day requires inactive status on the transplant list, so I only received Tylenol and Benadryl. Fifty milligrams of intravenous Benadryl is a lot for someone who typically takes half a pill for occasional allergies. Halfway through the two minute dose, the room began wavering. The nurse recommended that I close my eyes, but that only induced rapid swirling. After alternating between waving and swirling a few times, I stopped resisting the wooziness and relaxed in my recliner. Then the real medication started. The infusion burned a little, a thread of discomfort wending up my hand, up my arm, then dissipating. After twenty minutes or so, I stopped noticing the rhythmic zing of slight pain and fell asleep, awakening for Peter's occasional visits to keep me company.

The session finished in mid-afternoon. As a treat for getting through my first dose, Peter took me to the Jacques Torres pop-up shop for hot chocolate. Then, we went to the grocery store to shop for dinner. I was in charge of vegetables; Peter was responsible for protein. I managed to select and bag broccoli and Japanese sweet potatoes before realizing that I was no longer wearing my wedding band. All the fluid from the IV infusion made my left hand swell, so I took off my ring afterward and put it on my other hand, incorrectly thinking it would stay put. I was totally panicked but still loopy enough from the Benadryl that I could only stand in front of the potatoes in bewilderment. Fortunately, Peter's detective skills were sharper than mine. After spending five minutes removing and replacing all the potatoes in the bin, he quickly tracked my ring to the floor in front of the broccoli display. He put my ring on his pinky for safekeeping, and shuffled me through the checkout to the car before I could lose any more valuables, insured or otherwise. Of course the Benadryl wore off around midnight, when I should have been ready for bed. I felt inspiration stirring as I one-finger pecked blog ideas into my phone in the dark. The next day, I had some mild skin reddening and warmth, but once they wore off, and after a few days of sluggishness, I'm back to my usual self. After my second dose next Monday, I'll wait an additional two weeks before attempting to reduce my prednisone dose. Then we’ll see if all the Benadryl befuddlement was worth it.