A case of rapidly progressing secondary progressive MS despite treatment with rituximab. How to investigate and manage SPMS and at the same time managing expectations.
I agree, I am glad you reviewed this case. I am profoundly humbled in reading this man’s experience. We each have personal struggles as patients but his course seems excessively harsh.
I too hope he has social and family support as engagement offers so many positive benefits- fun experiences, assistance with daily tasks, a focus outside-of-self, ideas and collaboration. Of all these I believe Fun - and maybe alongside this - Hope cannot be underestimated.
If he does not feel he has sufficient social support I encourage him to look online. He may find people who ‘get it’ in a way pw/oMS cannot understand. I used to use Shift.MS but I am unsure of how much it has changed with time.
Information is also SO important- so this MS Selfie and the regular Blog are key reads. MultipleSclerosisNewsToday.com has some good articles- especially on coping. They now also have a podcast but I cannot personally recommend (have not tuned in).
This Blog post from last year really helps express how life has changed:
I'm in India and am in a similar predicament as the person in the case study. I have attempted to get subcutaneous cladribine with 3 neuros who refused as this has not been used here in this form for treating MS as yet. I also approached Merck to see if they would extend Mavenclad on a compassionate basis, but even they have refused. Do you know of any like minded neurologists in India that I could try? Thanks and regards.
Thanks for posting this case study Prof G, I really feel for the patient and it’s really useful for us to understand the strategies we can use to help our symptoms.
If you saw a similar case to this in your practice at the CIS stage today what would you do?
I know NHS England won’t recommend the use of any of the licensed products at CIS, but could you use SC cladribine at CIS off-label in patients with poor prognostic factors? I assume SC cladribine would fall outside NHS England’s high cost drugs (and many may be willing to pay if it couldn’t be done on the NHS), could it potentially save so much suffering (and economically future NHS drug and social care costs)?
https://www.healthline.com/health/secondary-progressive-ms/new-treatments ?!
I agree, I am glad you reviewed this case. I am profoundly humbled in reading this man’s experience. We each have personal struggles as patients but his course seems excessively harsh.
I too hope he has social and family support as engagement offers so many positive benefits- fun experiences, assistance with daily tasks, a focus outside-of-self, ideas and collaboration. Of all these I believe Fun - and maybe alongside this - Hope cannot be underestimated.
If he does not feel he has sufficient social support I encourage him to look online. He may find people who ‘get it’ in a way pw/oMS cannot understand. I used to use Shift.MS but I am unsure of how much it has changed with time.
Information is also SO important- so this MS Selfie and the regular Blog are key reads. MultipleSclerosisNewsToday.com has some good articles- especially on coping. They now also have a podcast but I cannot personally recommend (have not tuned in).
This Blog post from last year really helps express how life has changed:
https://multiple-sclerosis-research.org/2020/07/the-kingdom-of-the-sick/
I leave with my prayers for this man in finding the answers he seeks and a life in balance with his ever changing reality.
Dear Professor,
I'm in India and am in a similar predicament as the person in the case study. I have attempted to get subcutaneous cladribine with 3 neuros who refused as this has not been used here in this form for treating MS as yet. I also approached Merck to see if they would extend Mavenclad on a compassionate basis, but even they have refused. Do you know of any like minded neurologists in India that I could try? Thanks and regards.
Thanks for posting this case study Prof G, I really feel for the patient and it’s really useful for us to understand the strategies we can use to help our symptoms.
If you saw a similar case to this in your practice at the CIS stage today what would you do?
I know NHS England won’t recommend the use of any of the licensed products at CIS, but could you use SC cladribine at CIS off-label in patients with poor prognostic factors? I assume SC cladribine would fall outside NHS England’s high cost drugs (and many may be willing to pay if it couldn’t be done on the NHS), could it potentially save so much suffering (and economically future NHS drug and social care costs)?