Case
I am 35 and was diagnosed with RRMS in February 2022. What led to the diagnosis was a relapse (in hindsight) in September 2021, leading to persistent severe 'MS Hug' with debilitating pain. Low-dose gabapentin and amitriptyline keep these symptoms manageable.
In July 2022, I got COVID-19 and relapsed again (MRI showed a new lesion in the upper cervical cord at C2). I was offered a choice of high to lower-efficacy DMTs. As I wanted to delay/stop as much damage to the brain/spine as possible, I chose ocrelizumab.
My brain and spine MRI scans in June 2024 show no new lesions since 2022 and no Gd-enhancing lesions.
Unfortunately, my ocrelizumab journey has reached its end after four cycles of treatment. In the past 12 months, I've had persistent sinus infections and, unfortunately, in the past month, two reoccurring bouts of pneumonia. I live on antibiotics. I was informed that my IgG count is low.
I have small children, which puts me at a higher infection risk of infection. I therefore felt an immunomodulator might suit me better. I discussed options with my MS team. My attitude to MS follows what I see to be the best advice from neurologists now - go hard early on. With that in mind, I was keen to see if I could start, for instance, cladribine (Mavenclad). However, I was told I would not be eligible for cladribine under current NHS guidelines. I was therefore offered ponesimod.
I looked at your resources and others on ponesimod. It looks promising. But my primary concern is the constant immunosuppression again. Also, the side effect profile seems unappealing compared to what I had on ocrelizumab. I also have asthma that is well controlled, and I am concerned that ponesimod might make it worse.
My questions are:
Am I being too pessimistic/concerned about ponesimod?
Is teriflunomide a better option instead?
Do you have any other options/advice? Some people take extended doses of ocrelizumab, not every six months.
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Prof G’s answer
Q: Am I being too pessimistic/concerned about ponesimod?
You are correct that ponesimod is a chronic immunosuppressive, and with your history of recurrent sinusitis, pneumonia and low IgG levels, you would be taking a risk. ….
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