Finally the Right Mix?
After having the same rheumatologist for an entire decade, I switched doctors a little over a year ago. It was a bit scary to make the change, and I’ve gone back and forth on how I feel about it. On one hand, the new office is nearby, the wait time is always short, and the office staff is incredibly responsive and helpful (these were the main factors that led me to change doctors in the first place). As far as the rheumatologist himself goes, this jury of one is still out. I’ve fluctuated between being really happy with his knowledge and his bedside manner and feeling frustrated with the difficulty in getting palliative medications such as painkillers and muscle relaxers. I have to rely on my general practitioner for those medications, even though it’s my RA that causes the need for them. Therefore, it’s been hard to feel certain I made the best decision. However, a recent development has left me feeling incredibly happy with my new(ish) doctor. In the 15 months he’s been treating me, he’s never stopped trying to find the right combination of medications, and I’m starting to think he may have found it.
When I first started seeing him I’d been on Humira for several weeks, after giving up on Xeljanz, which was ineffective for me. We gave Humira a couple more months to take effect, and when it didn’t he switched me to Orencia. This biologic did have some impact on my rheumatoid arthritis symptoms, but I was still experiencing a lot of pain, swelling and fatigue. He added Methotrexate, which I only took for a few weeks, as it caused an intolerable level of nausea and vomiting. Replacing the Methotrexate with Arava took care of my side effect concerns, but I only saw minimal improvement. However, my doctor did detect decreased levels of swelling. I always focus more on my pain levels than on my inflammation, as the former screams louder than the latter, but when he noted the decreased swelling I could see the marginal improvement as well.
My old doctor probably would have stayed with the regimen of Orencia and Arava. In the many years that she treated me, she only changed my medications when a flare lasted weeks on end (with the exception of prescribing dose packs of methylprednisolone during shorter flares). However, at my last appointment with my new rheumatologist, he said he thought that by adding a third medication, Plaquenil, it was possible I might go into medically-induced remission. I detailed my response to that in an article entitled Holding Out Hope?, but to sum it up, I was shocked that he thought remission was a possibility, and I was both excited and dubious about entertaining the notion.
Until last week.
I was washing my hands, and as I rinsed my soapy fingers under the water, my wedding ring almost came off. Surprised, I slid it on and off my finger several times. This was a new development. When my husband and I got married almost nine years ago, I was a little nervous about wearing a ring. In high school I loved wearing jewelry, and when my grandmother bequeathed her ring to me, I wore it constantly. That is, until a few years later when I started swelling so much I had to force her ring off my finger while I still could, a process that involved a lot of dish detergent, tears, and cursing. So when my husband proposed to me, our first errand was to a jewelry shop to buy a chain so I could wear my engagement ring around my neck. When it came time to buy wedding rings, I consulted with a skilled jeweler who said she could make a ring that was slightly too large for me, and outfit it with a spring-loaded spacer so that it would automatically adjust to my finger as my levels of inflammation rose and fell. That worked wonderfully for a couple of years until the spacer broke off. I had it replaced, but the next time it broke off I just went without the spacer, as my finger was so swollen the too-large ring fit perfectly. That’s how it’s been for years, with my fingers consistently swollen to a larger size. Until now. Now, the ring is loose!
I’ve been on Plaquenil for five weeks, and I’m hoping this current reduction in swelling continues. Yesterday, I woke up before my alarm went off and felt like I was bursting with energy. I can’t remember the last time I felt overjoyed to wake up and get myself ready for the workday and my kids ready for school. I felt bubbly and excited. Then a thought occurred to me: What if this is what it feels like not to be weighted down by crushing fatigue? What if this energetic, buzzy feeling is actually normal, but to me feels extraordinary because I’ve been suffering varying levels of fatigue for so many years now.
It’s still too soon to tell if these exciting developments will stick, but I’m feeling optimistic. I’m also feeling grateful to my rheumatologist, who has never treated any improvements in what I endure as “good enough,” instead continuing to strive for the ideal of remission. Thanks to his persistence, I’m starting to believe that maybe remission could be more than a lovely dream. Maybe, just maybe, it could become my reality.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?