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:
They offer education and interaction (via Zoom) surrounding one educational aspect per month. Bowel and bladder issues is an example, nutrition or physical therapy... They start the month with an introduction to the topic via a webinar that is always available- archived on their site. Just ask if you can’t find a topic- the organization is a bit wonky.
Then they have 2 one hour long interactives and 2 two hour interactives via zoom per month. Participate as you can- they are based in CST in the US but have morning, mid day and evening programs.
You cannot go back to view the interactives due to privacy concerns these are not recorded.
You can also apply for a free several day seminar that will include 1:1 interactions between you and an expert on the topic- such as financial planning, caregiver support, exercise for your situation, physical therapy that might help, etc. I think they have these 2x/year. The application is really for them to use to match you with experts.
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.
You may want to contact the team at St John’s Medical College Hospital in Bengaluru. Dr Thomas Mathew is the MS expert at that centre and may direct you to someone who uses off-label subcutaneous cladribine. We can supply the protocol if you need it.
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)?
Yes this patient lost out not being diagnosed at the CIS stage. With the new diagnostic criteria most people with CIS now have MS so we offer platform treatments after one attack.
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.
Oh- I forgot to mention my favorite support and education site:
https://www.cando-ms.org/
They offer education and interaction (via Zoom) surrounding one educational aspect per month. Bowel and bladder issues is an example, nutrition or physical therapy... They start the month with an introduction to the topic via a webinar that is always available- archived on their site. Just ask if you can’t find a topic- the organization is a bit wonky.
Then they have 2 one hour long interactives and 2 two hour interactives via zoom per month. Participate as you can- they are based in CST in the US but have morning, mid day and evening programs.
You cannot go back to view the interactives due to privacy concerns these are not recorded.
You can also apply for a free several day seminar that will include 1:1 interactions between you and an expert on the topic- such as financial planning, caregiver support, exercise for your situation, physical therapy that might help, etc. I think they have these 2x/year. The application is really for them to use to match you with experts.
I hope this might be of help to you!
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.
You may want to contact the team at St John’s Medical College Hospital in Bengaluru. Dr Thomas Mathew is the MS expert at that centre and may direct you to someone who uses off-label subcutaneous cladribine. We can supply the protocol if you need it.
Dear Professor, Also if you could provide the protocol for the use of subcutaneous cladribine. Thanks and regards.
Thank you sir, we'll try contacting them.
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)?
Yes this patient lost out not being diagnosed at the CIS stage. With the new diagnostic criteria most people with CIS now have MS so we offer platform treatments after one attack.