I consider myself a good patient. I bet if you took a survey of my doctors and asked them if I am a good patient, they would also check that box. A significant credo in my life is that a treatment plan won’t work if you don’t follow it. After surgery I have rested, iced, exercised, strengthened and physical therapied myself back into shape. For RA, I have swallowed pills, exercised, X-rayed, and watched my diet. I have also injected once a month, once every other week, once a week, and once a day as well as suffered through hours-long infusions that did nothing more than left me with a headache and nausea.
But I am also an active participant in my health care and, at the moment, I am
actively NOT taking my biologic.
It didn’t start out that way. At the end of March, my rheumatologist took me off leflunomide (Arava) because my liver enzymes were elevated. When I saw her in mid-April before the trip, she started me on 10 mg of prednisone to keep me going through our vacation. I was hopeful that she would also switch me off the Kineret, which is a daily injection because (1) I really didn’t think it was working anyway and (2) I really didn’t want to babysit 14 pre-filled syringes all over Europe. But she was reluctant to take me off both leflunomide and my biologic without a different treatment and she didn’t want to start a new medication right before I left the country for two weeks. So off to Europe I went, still on the Kineret.
Things went pretty well until one day in London there was a mishap with the mini-bar fridge where I had stored my Kineret. The remaining syringes spent at least 12 hours being warm which is not what you want to have happen to a biologic that’s supposed to be kept refrigerated. That event coincided with the fact that I was getting sick so I made the decision just to forego any more Kineret until after I got home. Either it wouldn’t work because it had gotten warm or it would work and I would potentially get even sicker because my immune system would be further compromised.
So since that time (a little more than two weeks ago), I’ve taken nothing for my RA except for 10 mg of prednisone a day. I did refill my Kineret prescription when I got home. And I’m pretty much over the crud I had. I just can’t seem to get motivated to restart the Kineret. I don’t think it’s working for me and frankly, I hate the daily injections. The prednisone seems to be enough to keep the inflammation generally down and the flares at bay without being strong enough to interfere with sleep or produce any of the other noticeable side effects.
So here I am, Ms. Poster Child for patient compliance being on strike against taking my biologic. Not exactly an earth-moving revolution, but for me, it’s a pretty significant step.
I don’t know that prednisone is a long-term solution. While I love all the good things it does for me, it has a very dark side. But I’m down to two biologics that I haven’t tried yet, Rituxan and Acterma. Given the choice, I’m not sure I wouldn’t just rather ride the prednisone wave a bit longer.
I see my rheumatologist in about 10 days. My plan is to stay off the Kineret until I see her again. Then we’ll see what comes next and whether I can regain my “good patient” status.
I hope whatever revolt you happen to be leading at the time is a huge success. Thanks for checking in.