After more than eight years of being diagnosed with RA I truly understand that it can be weird and unpredictable. That being said, I’m in this strange place of feeling really, really good but I have joints that hurt really, really bad.
Last December I changed treatment plans yet again. I started Simponi Aria and have continued with my methotrexate injections. Simponi Aria is the infused form of the Simponi injections which I had been on before. Simponi Aria starts with a loading dose, has a second loading dose four weeks later, then continues on with regular infusions every eight weeks. I had my first loading dose in December with the second one in January, then had my regular rheumy follow-up in mid-January, shortly after the second dose.
I had felt lousy for some time. My previous treatment plan had failed then I was without any medication except MTX and a low-dose prednisone for a month waiting for insurance approvals before I started treatment. And we all know that it can take months before a treatment starts to work.
At my rheumy appointment, it was too early for the Simponi Aria to have “kicked in”, and I was so discouraged at feeling bad for such a long time, my rheumatologist suggested a steroid shot, which we did. I had been having issues with my on-again/off-again hip bursitis anyway, so we did the injection at that site.
A week or so later I realized that I was feeling better. Not great, but better. I initially put it down to the steroid shot. By then I had started trying to walk most days which I have not only been doing, but gradually adding distance to my walks. Now I walk a very respectable distance at least five days a week. Although my ankles, knees and hips get sore from the exercise, I haven’t flared from all this additional stress on my body. And as time has gone on, I’ve continued to feel better — either from the exercise or the treatment plan or both.
Beyond that (hallelujah!) the fatigue is gone. That bone-deep, unrelenting, energy-draining, spirit-killing fatigue has lifted. I now feel good when I wake up in the morning. I have energy. I want to do things.
I honestly don’t remember feeling this good all over since before my diagnosis.
On the other hand (literally), I have been having specific joint pain that would have previously sent me running to my rheumatologist’s office. Since I am feeling so good otherwise, I haven’t scheduled an appointment. However, the joints in my hands have been increasingly swollen and tender, often with sudden shooting pains that take me by surprise. I use Voltaren gel like hand lotion and I’ve quit doing things that require a lot of hand work — like extended cooking sessions.
So how can I feel so good all over but have such pain and obvious RA symptoms in my hands?
Honestly, I don’t know.
I do know that RA is a complex disease and that there are different kinds of inflammatory elements that can come into play. Simponi Aria is a TNF-blocker that interferes with that specific inflammatory response in my body. Other types of drugs work by interfering with other elements such as interleukins or Janus kinease (JAK) responses. Just because Simponi Aria is apparently calming my TNF response doesn’t mean that the other inflammatory agents also play dead. It’s possible that I feel good all over because my primary issue is TNF response and it’s coming under control, whereas interleukins or JAKs continue to be evident in my hands and (occasionally) other joints. It’s just a theory I have and, as far as I know, there is no scientific data to support it, but it seems to support what’s going on.
What I do know is to count my blessings. Right now I’m feeling good, optimistic, energetic, inspired. I haven’t had that in a very long time.
I hope you have many blessings to count in your life as well. Thanks for checking in.