Barts-MS rose-tinted-odometer: ★★ (Monday feels like an orange day; an orange cocktail day)
“I can’t wait for the next MS breakthrough; it will take 10-15 years to reach the clinic. I have smouldering MS and I need to do something about it now. Tell me Gavin what would you do if you were in my situation ?” PwMS
I have just had a call with a person with MS who I know very well. This person is not a patient of mine but he was asking me honestly what should he do about maximising his chances of doing well. He has been reading my recent blog posts and feels he needs to do something about his MS. He said he doesn’t want to have any regrets.
In summary, he is middle-aged (49 years of age) and was treated with dimethyl fumarate for 6 years and was switched to ocrelizumab shortly after it was licensed. The switch was not because of breakthrough disease activity; he just thought he needed to be treated with a more effective DMT and the private neurologist who he saw recommended against having HSCT or alemtuzumab. He remains relapse and MRI disease activity free but has noticed his left leg dragging after walking long distances. His memory is not as good as it was in the past and he suffers from cognitive fatigue. He just knows he is getting worse regardless of what his EDSS and MRIs are showing. He knows he has early SPMS or smouldering disease.
What should he do?
In the past I have always told my patients I am an academic and I can’t recommend X or Y because the evidence is just not good enough that they will make a difference. I also don’t want to be viewed as the MS expert who is recommending off-label or unproven therapies. The line between being an evidence-based practitioner and a quack is a fine line.
Do I tell him to hang in there and wait for an evidence-based therapy to emerge or do I give advice about things that may make a difference? If I did give him advice would a scientific rationale be enough (preclinical data) to support my position or should my advice be based on data from preliminary trials in people with MS? Do you think it is irresponsible to give generic advice on managing smouldering MS? Finally, do any of you have advice on how you are self-managing your smouldering MS?
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust and are not meant to be interpreted as personal clinical advice.