I started Actemra infusions in early December 2012. After trying four biological treatments over the past four years – Enbrel, Cimzia, Humira, and Orencia – I tried not to get too cynical about the potential outcome. At the same time Actemra infusions began, my rheumatologist put me on a different DMARD – azathioprine or Imuran. We started at the lowest possible dose of each – 4mg per kg of body weight of Actemra for monthly infusions and 50mg a day for azathioprine. A dramatic impact began about 3 weeks after the first infusion. The change was almost overnight. Within a 24-48 hour period, my energy levels skyrocketed and joint pain diminished. My wife immediately noticed the change for the better. Sleep was more refreshing, the ability to do work increased, stiffness was almost non-existent, and I wasn’t a slug by dinner time. A real treat was the three times I got on our elliptical to exercise for 20 minutes – it had been almost four years since I last exercised!
But as quickly as the amazing results came on, they began to fade away. By the time of the 3rd infusion, I was almost back to the place where I started. Energy levels and lack of joint pain were tracked on a scale of 1-10 and the graph pictorially depicts the results. At the same time this was occurring, we noticed a dramatic increase in cholesterol levels and blood pressure which coincided with the start of Actemra. According to the Actemra prescribing information, increased cholesterol and hypertension are common side effects.
My rheumatologist is a very knowledgeable and compassionate doctor. Her goal is remission and she will try whatever it takes to get there. While driving to an appointment this morning, I began to wonder if I had seen the last of Actemra. The choices are getting slim – really only Rituxin and the newly approved Xeljanz. But she said that I was on the lowest dose of both Actemra and azathioprine. So, we’re doubling down on both in an effort to recapture those golden moments experienced in January. We’ll try 100mg of azathioprine daily and 8mg per kg of body weight of Actemra infusions monthly. Of course we’ll continue monitoring cholesterol and blood pressure. I’ll keep plotting the results and see the outcome of this latest experiment.
I’m so sorry, but I’m delighted for the ray of hope that remains. I had a similar experience when I was on Simponi — I was good after the injection, but the results didn’t last the full four weeks. I am hopeful that an increase in levels will increase the benefits but that the cholesterol and BP remain benign. Hang in there and please keep us posted.
Thanks for the kind words Carla.
Keeping everything crossed….
Thanks Lene. Loving the book thus far!
What a disappointment, Andrew. Here’s hoping your doc is right and that the higher doses of both drugs will work as well as–and better!– than the initial doses did, except not so briefly. This disease can be so demoralizing. My fingers are crossed for you.
Thanks Wren. Ups and downs but I’d rather be on the roller coaster than a boring merry go round. It only makes us stronger in the long run.
Wow, it sound like you were so close! Even on good old basic MTX I’ve noticed that on some weeks I get a better result than others. Sometimes I wonder if we will all end up on cycles of alternating medicines. Such a mystery our bodies are!
Yep, RA and the meds seem to affect people differently. And changes in disease intensity come and go. Such is the nature of the beast!