When Medications Reveal More Spondyloarthritis Symptoms
Over the last year, I’ve been playing the trial and error game to figure out a better combination of medications to manage my ankylosing spondylitis. The truth is, it’s hard to know what your body is going to react well to. What works for one person with AxSpA might not work as well, or at all, for someone else with the exact same diagnosis. And sometimes, though one medication combination might seem like a dream compared to what day-to-day life is like without medication, there may also be a better option on the horizon. So, I chose to take a chance to find out.
Prior to this year, I’d been on the same biologic and disease-modifying antirheumatic drug (DMARD) combination for several years. Though this combination had worked somewhat well for me, I still dealt with moderate lower back pain and peripheral joint pain. Pain and swelling in the small joints in my feet would sometimes interrupt normal outings, even those involving minimal exertion. Additionally, the knuckles in my hand would swell almost daily when cooking, writing, cleaning, and even driving.
Then, I started noticing my fatigue and pain levels gradually worsening two-to-three days before I was due for my next biologic injection. That’s when I reached out to my rheumatologist to find out my options.
Trial and error #1
Here were my options, presented to me in simple terms: change my biologic or change my DMARD. This was not the first time a rheumatologist has suggested changing my biologic, but I’m always hesitant to do so since Humira has made such a positive impact on my stiffness and fatigue levels. So, the obvious choice for me was to change my DMARD.
Since I was currently on sulfasalazine, my rheumatologist suggested I try out hydroxychloroquine and see how that works. My first month on the new medication was miserable. I experienced increased peripheral joint pain that made me question my choice to switch. The increased joint pain also confirmed that the sulfasalazine was actually working, even if it wasn’t working as well as I would have liked.
Then, the hydroxychloroquine started to kick in, and honestly, I felt good. I couldn’t remember a time when my body felt so good, with pain, stiffness and fatigue levels all relatively and consistently low. It was too good to be true.
During my first month on hydroxychloroquine I developed what I thought was eczema in three locations. These red, itchy spots looked like eczema, and I do occasionally develop eczema in the winter, so I thought nothing of it. But when the spots not only did not go away after four months, but also became more raised and flakey, I started to doubt whether this actually was eczema. After sending some pictures to my rheumatologist, he confirmed what I suspected: this was most likely psoriasis.
Trial and error #2
Which leads me to round two of trial and error. Since hydroxychloroquine can exacerbate plaque psoriasis (not induce), my doctor recommended switching back to the sulfasalazine to see if the psoriasis clears up1. Since I now knew the sulfasalazine worked for me, at least somewhat, and since the psoriasis spots were crazy itchy, I decided to make the switch back.
But it’s hard to go back to a medication that was only partially controlling my arthritis symptoms, especially after I experienced such an improvement on hydroxychloroquine. So, after two months suffering through moderate joint pain and no improvement with the psoriasis (though no worsening either, to look on the bright side), I decided to change course again.
Where I’m at now
Technically I’m on trial round three, and it’s working out fairly well. I’ve swapped the sulfasalazine for methotrexate, which seems to be working nearly as well as the hydroxychloroquine for joint pain, stiffness and fatigue. No complaints there.
But the plaque psoriasis is still hanging around, leaving me with more questions for my doctor. I’m beginning to wonder whether a new spondyloarthritis diagnosis is on my horizon. I have six weeks to wait until my next in-person rheumatologist appointment arrives, and hopefully after that I’ll have more answers than questions!
Does reading AxSpA patient stories help you in your journey?