Happy Holidays to all!
It's been quite some time since I've posted or even been to RA Central. It's good to be back.
It's been a year of ups and downs for me. I had been on Humira for 1.5 years after being on Enbrel and Cimzia. A couple of months ago it became slowly evident that Humira just wasn't helping. I tried to ignore it (put fingers in ears and yell "la-la-la") but the reality set in one day when my orthopedic surgeon asked me..."But how are you feeling?" He had found bone erosion in my heel bone which resulted in a bone spur sticking into the back of the achilles tendon. He began to question the efficacy of Humira. Here was physical evidence of RA and I still wanted to ignore it. His question jolted me to my senses and I realized that joint pain and fatigue had crept back in over the past few months. And it took a non-rheumatologist to do this. Maybe it's like the frog slowly cooking in the heating pot.
Surgery on my ankle was scheduled for the later part of November so I had to go off Humira. In the meantime, I saw my rheumatologist and he agreed that we needed to talk about Humira after surgery. But then I mentioned recurring swollen lymph nodes and he sent me off to an oncologist to check them out. Fortunately, a CT scan and blood work were all negative. But the blood work also showed that I had a positive rheumatoid factor test for the first time. I was no longer seronegative. A pathology report from the heel surgery also revealed that the erosion was caused by rheumatological processes. Everything was pointing to the fact that TNF blockers were not working for me. My oncologist admitted that TNF blockers aren't all they're advertised to be and mentioned that a fair amount of people are not helped by them (I'm happy for all of those who are helped by them).
The surgery was successful in removing the damaged bone tissue, spur, bursa sac, and cleaning up the achilles tendon a little. I got through Christmas and can walk again without crutches. But now that I have been off any DMARD for almost two months, I'm feeling the full brunt of the RA. My rheumy and I had a discussion about what's next. He suggested that I need to move away from TNF blockers and wants me to try Orencia infusions which will begin next week. I know studies show that after failing two TNF blockers, the chance of a 3rd one helping drops dramatically so I know I'm beyond that. In some ways I'm glad to be moving to trying Orencia as it operates on a different part of the RA biological processes. I'm looking forward to getting back to feeling more "normal." On the other hand, I feel like I'm looking back at TNF blockers and moving up the list of possible RA treatments. There is an end in sight after Orencia...Actemera, Rituxan...that's about it except for some new kinase inhibitors that may hit the market sometime soon. So, here's to a new year and a new treatment, Orencia, and hoping that it works for me. And here's also to a new RA treatments and even a cure someday.
Happy New Year,