Adjusting the Meds
It’s always a gamble, a guessing-game to get the medications right. I think of it as a delicate balance. Enough of the drugs to reduce the inflammation and rheumatoid arthritis, but not too much to make the side effects impossible to live with.
Recently, I was in a pretty good place with my combination of medications. Feeling like my RA was well-managed and I wasn’t getting sick or having too many side effects. However, my liver enzymes were hovering just over the high edge of acceptable.
Could we bring down my methotrexate to improve my liver function test results while still keeping me in a functional place with my RA? The only way to know would be to try. Bring on the experiment! I am the guinea pig.
Unfortunately, it did not take long for my RA to worsen. After just two weeks I felt much, much worse. I was more achy and stiff. But the worst part was the fatigue. More than usual exhaustion dogged me from the time I awoke to the end of the day. Not only did I feel terrible and could hardly move or get through my day, my bone-deep exhaustion deprived me of energy. I started thinking: you will never feel better.
I went to get my blood test and my fears were confirmed. My CRP test came back the highest in a few years. On the plus side, my liver was happily back to well within normal range. But I immediately knew I could not go on like this. As the weeks dragged by, I felt worse and worse. My low seemed to be getting lower. It was past time to reach out to my doctor.
In our discussions, my doctor pointed out how my liver test results were so much better and that we had not cut my medication by much. However, I argued that it was making a huge difference in how I felt and my functionality. In the end, I decided to return to my previous methotrexate level and see if I began to feel any better. To me, this was the only piece of my treatment that had changed and so going back was the best way to test.
After a couple weeks, I feel like I’m on my way back to my previous ‘normal.’ I’m not fully there, but I’m having less aches overall and feeling much more energetic. It’s truly amazing how much of an energy-zapper RA can be, even after living with it for so many years.
One of the big advantages of feeling better is that I can do more of my exercises, which helps me to stay healthier and stronger. When I am in such pain that basic movements hurt, it makes it very difficult to do my daily stretches.
This little medication experiment also reconfirms how uncontrolled RA damages not only my body but also my mental and emotional health. Sure, it’s easy to understand that an aggressive disease harms the joints. But it also drains the soul. When RA is flaring wildly, I feel bad about feeling bad. I start to think, this is how it is and will always be. But in reality, I may be able to feel better. I don’t have to feel bad forever if I can find the right balance in my medications and treatment. I have to remember to keep fighting.
While I think this experiment was necessary for my long term health as I have to find a combination of drugs that will treat my RA without damaging other organs, I also can say I did not enjoy it. I’m afraid that I won’t fully get back, but I have to give myself time for the medication to work. I’m also reminded that without effective medications I have a very active and pernicious disease. It seems to have only grown meaner with time and I cannot take my eyes off it. Managing my RA involves constant vigilance and listening to the alarm bells in my body.
Have you reclaimed what RA has tried to take away?