I couldn’t figure out what to title this post. It could be a lot of things including, “Why I Love My Rheumatologist”, or “Take That, RA!”, or even “The Hail Mary.” Better I should just fill you in.
Even though I haven’t always expressed it in this blog, I have been very discouraged. My RA hasn’t been well-controlled since Xeljanz stopped working for me more than a year ago (August 2014). Since then I’ve been through Remicade infusions, daily Kineret injections, Actemra injections and, most recently Actemra infusions. It’s not that we haven’t been trying, my RA is just stubborn. And I must tell you, going from drug to drug to drug without success (on top of everything else that’s happened the last year) has taken its toll. Treatment has been further curtailed because my liver enzymes have been frequently elevated, leading to backing down on my medications and a series of lab tests and a liver biopsy that, fortunately, eliminated any concern of liver disease.
Yesterday I had my appointment with my rheumatologist. I purposely moved it earlier in order to see her before my infusion scheduled for next Monday. I started the conversation by telling her how discouraged I’ve been and that I haven’t had a day that I’ve felt really well in over a year. I also told her that if this the new reality of my life and she told me that, I would accept it, but I couldn’t continue on the way we have been. I needed to either resign myself to not feeling well or we needed to do something to improve the situation.
She pulled up my labs on her laptop and, turning the computer so I could see it, we went over my test results, the notes from my liver biopsy, and my treatment history. We talked about treatment options. We both agreed that we need to see if we can enhance my results with Actemra because, other than Rituxan, I have “failed” on every other biologic on the market.
Pretty much across the board, medical protocol is to start with the lowest dosage of a drug and increase in small increments until you achieve the desired results. This is what we’d been doing for the last year without success. We needed to get the situation under control. I told her we could always back down if liver enzymes or other factors dictated it.
So, starting immediately, this is the new protocol:
- Double the Actemra infusion dosage from 4 mg/kg to 8 mg/kg. First infusion is in three days (assuming insurance approval).
- Add 15 mg of methotrexate via injection weekly (as opposed to the 20 mg. of leflunomide that I was taking at one time and had to stop because of liver issues). Include folic acid to help offset the side effects.
- Monitor labs every four weeks to make sure we’re not blowing out my liver or have other concerns.
She also gave me a steroid injection in my left hip. For the first time in months I got a good night’s sleep without constantly tossing and turning or waking up in pain due to the bursitis.
Yes, it’s a lot of drugs. But for the first time in over a year, I feel encouraged and hopeful. As I told my rheumatologist, if we can get things under control, we can start backing down, but now that Hail Mary pass is what we need.
I appreciate you for coming along with me on this journey and the support you’ve given me. Hopefully this start to the new year will be the start of better health for me. Thanks for checking in.