It’s been nearly a year since I was diagnosed with enteropathic arthritis and I’ll be honest, it’s been a bit of a battle. I’ve tried two different biological drugs, both of which didn’t work, and basically had a year of really struggling.
Different medications for enteropathic arthritis
When I was first diagnosed, I was put on a biological drug called golimumab and, to put a long story short, it didn’t work.
At the beginning of the year, I was put onto the Humira bio-similar, adalimumab. I was told this was going to change my life and be a real turning point in my illness. Fast forward a few weeks and some horrendous side effects occurred so I was taken off that as well.
Because of all my issues, I was referred to the Freeman hospital in Newcastle as they’re a lot better than my local hospital. My new rheumatologist has said we’re going back to the beginning and re-doing all my scans because
It turns out that I should really have responded to one of the treatments. Biologicals work on about 80-90% of people however if you go on to a second biological that percentage goes to 50-60%.
Because of that, I’m not going to be put onto anymore biologicals. I’m not going to lie, I’m pretty happy about that as I wasn’t a fan of them. I had side effects both times and found them really stressful being on because of it.
However, that has left me in a bit of a situation. All my bloods have been fine and my scans haven’t shown anything too alarming but I’m still in pain, struggling with stiffness and feeling pretty shit.
Where to next
I felt a bit deflated when I was told we were going back to the beginning of my diagnosis again. But, I was also relived that it was getting looked into properly and I wasn’t just been given a quick fix of pain medication.
My new rheumatologist is GREAT and she really took the time to talk to me and actually see how I move. She noted that I seem to have more than normal flexibility in my joints (which is a SHOCK as I have never been referred to as flexible, quite the opposite actually!)
She’s ordered a new MRI because she didn’t know what the previous one was set to and I’m having ultrasounds on my ankles and hands as they are both problem areas for me!
As well as my normal blood tests, she’s also ordered a test to see if I have the HLA-B27 gene. 9 out of 10 people who have Ankylosing spondylitis have the HLA-B27 gene. If I test positive for it, it may make it easier for them to determine which arthritis I actually have.
So yeah, I’m currently playing the long waiting game of diagnosis again. It does feel like I’m going round in circles but hopefully it’ll mean firmer solutions in the future.
In the mean time, I’m working on pushing myself a bit and exercising more. I’ve really been struggling with pain and fatigue but I’m challenging myself in July to push myself as much as possible.
The doctor said that exercise and keeping myself moving will help in the long run (although she did say the first few weeks might be tough!).
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