ClinicSpeak: managing expectations in worsening MS

Should we ban the use of the term progressive in MS? #ClinicSpeak #MSBlog #MSResearch

"We are about to have ocrelizumab licensed for primary progressive MS. People with PPMS (pwPPMS) typically don’t have relapses, they get worse slowly and relentlessly. So if they go onto ocrelizumab that slows down 'progression', or the the rate of worsening, of disability how are they going to know if they are responding to ocrelizumab, or not? Do you think you will know if you are a responder if you continue to worsen, albeit more slowly? I suspect not. My survey from several years ago on this issue highlights the issue. Some pwPPMS are expecting to improve, or get back to normal, with an effective DMT for progressive MS. This is an unrealistic expectation. The ocrelizumab trial data suggests most pwPPMS will simply get worse more slowly. The question is will you notice a response?"


'I can imagine the discussions that I am going to have with our patients.  

PwPPMS: 'Prof G you told me this drug was going to help me. It is not; I am still getting worse. Last year I could manage to walk 200m and now I can't do more than 50m and it exhausts me. I have also had to start using a wheelchair when I go out.'

Prof G: 'I did warn you that you may not notice any dramatic effect. Although it is clear that you are worsening, you are probably getting worse more slowly than you would have if you were not on ocrelizumab.'

PwPPMS: 'Is there anything that you measure to show me that it is working?'

Prof G: 'We are monitoring you with an annual MRI scan and as you have seen there are no new lesions on your MRI therefore ocrelizumab is working it is stopping new lesions from developing.'

PwPPMS: 'It is clear that the MRI is useless in PPMS; it may work for relapsing disease but my MRI is stable and despite this it is only a matter of time before I need a wheelchair."

Prof G: 'Are you prepared to have a lumbar puncture? We could measure your spinal fluid neurofilament levels to see if they are raised, but as we don't have a baseline sample I wouldn't be able to tell if the levels have dropped on ocrelizumab.' 

PwMS: 'Not sure I want a lumbar puncture; the last time I had one I had a terrible headache.'

Prof G: 'We have changed our method of doing an LP and now use a atraumatic, or non-cutting, needle that reduces the chances of you getting a post-LP headache. We are also using ultrasound guidance which also minimise the risk of a painful LP.'

Etc. 

'By the way I hate using the term progressive, or progressing, MS. By definition ‘progress’ means improvement. This is why the term worsening is so much better when describing what is happening in relation to disability. Do you think we can ban the lexicon ‘progressive’ from the field of MS and get away with it?'


CoI: multiple

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