I was diagnosed with RA in July 2008. It’s been a pretty rocky six and a half years since then. In all, I’ve had nine surgeries since my diagnosis including three joint replacements, a revision to the shoulder replacement, two rotator cuff surgeries, two knee arthroscopies, and a disc removal and spinal fusion. My home furnishings have expanded to include grab bars in the bathroom, my own rolling hospital tray table, and a continuous cold therapy system.
My New Year’s resolution this year was to stay out of the operating room and, unless you count my SI joint injection which included anesthesia, I’ve made it so far.
Needless to say, my RA has not always been well controlled during this journey. I’ve systematically worked my way through most of the biologics on the market as follows:
|Methotrexate 35 mg||DMARD||7/12/2008||9/15/2008|
|Enbrel + 10 mg leflunomide||TNF Blocker/DMARD||4/18/2011||2/1/2012|
|Orencia + 10 mg leflunomide||T-Cell/DMARD||2/1/2012||10/16/2013|
|Cimzia + 20 mg leflunomide||TNF Blocker/DMARD||10/16/2013||3/19/2014|
|Xeljanz + 20 mg leflunomide||JAK Inhibitor/DMARD||3/19/2014||8/28/2014|
|Remicade + 20 mg leflunomide||TNF Blocker/DMARD||8/28/2014||Present|
I’ve only been on my most recent medication, Remicade, since August. You start with three loading doses/infusions. After my second loading dose wasn’t producing the desired results, my rheumatologist increased the dosage. Then after my first “regular” infusion, she increased it again. She said she wasn’t going to increase it a third time.
So after more than three months of feeling like I was pouring the $16,000 per infusion down the drain, I saw my rheumatologist this week. We agreed that we needed yet another change. There are only three current biologics that I haven’t been on: Actemra, Kineret, and Rituxan. She suggested Kineret. Who am I to argue? It’s one of the original biologics so its effectiveness and safety record is well established. And it’s not a TNF-blocker which five of my “failed” medications were.
I have hope.
The bad news (at least to me)? It’s a daily injection. (Yuk.) I’m not looking forward to that. In addition, there is a high incidence of injection-site reaction (ISR) and, given the daily injection, there’s not a lot of time for recovery before the next injection is due, although evidence suggests that these become less severe and/or disappear after about four weeks (that’s 28 injections).
Kineret also contains citric acid which means that the injection stings. Every day. I don’t think you ever adapt to that. And since it has to be refrigerated (and it’s a daily injection), I have to figure out how to travel with it. I used to be able to figure out my travel and medication schedule to avoid the situation, but with a daily injection, there’s not much choice. The bit of silver lining in this cloud is that it comes in a latex-free, prefilled syringe with a tiny needle. The needle is a 27 gauge for those of you who appreciate those things (and I do).
I know a lot of people need to take injections every day (insulin-dependent diabetics come to mind). Instead of being such a whiny baby, I should be grateful that I have choices in medicines and a rheumatologist that is willing to recognize when a treatment plan isn’t working and to suggest alternatives.
I am. Both. (A whiny baby and grateful.)
We still have to go through the insurance approval dance and all the paperwork. Once I get started on it, I’ll certainly update the blog with my experience.
So that’s where I am at the moment, how I came to be here, and what’s next on the agenda.
Hope that wherever you’re going, however you’re getting there, and whatever comes next in your life brings you many blessings.
Thanks for checking in.