Q&A 161: how to make someone with MS eligible for tolebrutinib
Welcome to the farce we call MS clinical practice.
Case study
I am a 52-year-old male with MS. My first attack hit when I was 38 and caused numbness and pins & needles down the right side of my body. I have had two attacks since then, but have been stable for a long while (by this I mean MRIs, etc.), up until 12 months ago, when disease activity and new lesions were spotted on two subsequent MRIs. I am about to switch from dimethyl fumarate (Tecfidera) to ofatumumab (Kesimpta).
Your theory of smouldering MS being the real MS resonates with what I feel physically. By this, I mean that I have had occasional feelings down the right side of my body (especially my right leg) over the years, even when my consultant said that I was stable. It seems consistent with the theory that my first attack and its damage were smouldering in the background and not completely stable.
The right leg and facial weakness have been particularly worrisome over the last 2 weeks.
My questions are as follows:
Questions
1. Is there any hope that ofatumumab will help with my smouldering MS? I know that you suggest high-dose B-cell therapy followed by a drop, ideally with ocrelizumab, but I am going for standard dose with ofatumumab.
2. Are there any tests or scans that I can do privately to check on my smouldering MS and brain volume, and what other tests do you recommend in this regard?
3. Why do other consultants not accept the theory of smouldering MS? I mentioned it to a neurologist I saw a while back, and he was quite dismissive and said it would just be scar damage on the lesion from my first attack.
Question added by me:
4. What other treatment options are available for this patient? Is he eligible for tolebrutinib?
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