The morning I woke up to go early to the clinic for a blood draw before work, I had a bad feeling. I just knew the results wouldn’t be good.
The following week I had an appointment with my rheumatologist and had the blood tests done in advance so that we could review the results together. While I understand the results of my usual blood tests, I find it helpful to view them with the doctor, so that I can ask questions and get his perspective on them.
One thing that is great about my doctor is that while the blood tests are seen as useful information, he also values speaking with me about how I am feeling. He values my perspective just as much as the blood test results.
I have been on a new medication (Xeljanz) since early December. It took about two months for me to feel that the medication was working in my system, but during February when I last saw him I had finally been feeling better. It was a relief to see the markedly improved inflammation blood test result at that time, along with the knowledge that my joints were overall feeling better. I had the hope that the drug would work and perhaps even last me a few years.
I felt a decline
But sometime in March and moving into April I felt a decline. While the fatigue had never let up much, I felt a further decrease in my energy levels. And joint aches increased with some days a little bit better than others. I feared the worst—a full medication failure.
Gloom grabbed my heart when I woke up the day of the blood test. I’m never happy to go to the lab because blood draws are so hard for me. But I was just convinced that the results would be disappointing.
I was right
A few days later, I was able to view the results online and found that my predictions of bad blood were right. My inflammation result (C-reactive protein) had more than doubled.
Surprisingly, my doctor was less disturbed by the blood test results than I was. The bad blood had gone to my brain and really depressed my mood. I felt bad. I was crabby. And I didn’t have much hope for improvement.
It felt like my rheumatoid arthritis had a taste of the drug, then spit it out with a laugh. “Ha!” it said. “Good try!” I imagined my blood cells laughing at me maniacally. It really is bad blood—bad to the bone. B-b-b-bad!
My doctor suggested researching another drug, but for now continuing on and seeing if the next blood test results would be better. Usually I see him every couple months, but this time I would come back in a shorter period.
For a couple days I moped
I bought myself chocolate cake and ate my feelings. Then I told myself the pity party was over and it was time to move forward. I got back to doing my daily exercises and started going to the pool for aqua therapy. Even if the drug was failing, these things would be good for me anyway.
There’s nothing I can do to make a drug work or fail. But I can do things to help myself with diet and exercise. Soon I will go back for the re-test and it may not be great, but I am already feeling better because I am taking care of my body better.
I’ve struggled with bad blood for as long as I can remember since my diagnosis at age two. I only remember having a normal inflammation test for a short period of time in my late teens. Ever since then my CRP has always been in the hot, hot, hot range. I may have bad blood, but I live with it as best I can.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?