This patient is NEDA-3 on fingolimod and is considering derisking his immunosuppression. Does he go lower and switch to teriflunomide or higher and choose an IRT?
Just to make the point that this patient would not be eligible for HSCT in the UK. However, he will be eligible for alemtuzumab or cladribine based on the criteria that were used to make the decision about starting natalizumab.
Very interesting. Good to know about brain volumn and how it's measured . Thanks for the comments. My neurologist probably inwardly groans when I say I've been reading from Prof G ....
It’s all so complicated. I have never been told what my brain volume is. My EDSS is 3.5, I know that at least! After having relapses whilst on rebif and avonex, I was put on gilenya in 2016 but being immunosuppressed worries me. The alternative treatments seem daunting, that’s if I was even able to change. I wish I understood it all more so I could make the right decisions. Thanks for the information, advice and expertise you provide Prof Giovannoni, even if some of it does go over my head! 🙂
Others aren't so lucky. I was misdiagnosed with Spinal Stenosis 10 years ago and it was only the start of this year I got an MS diagnosis, by which time I'd been progressive for over 5 years and now EDSS 6.0. The various Doctors & Consultants missed it and an Osteopath was the first to suggest getting a head scan.
No regrets seems to be a consistent theme of these case studies....there are certainly a lot of patients on the HSCT forums that wish they had taken action earlier but the decision is so much more difficult when you're not in the 'nothing to lose' territory. A couple of questions on the IRT options - alemtuzumab has obviously been shown to be very effective in normalising BVL and pushing the disease into remission early in the course. However, it doesn't cross the BBB. Therefore, in cases where treatment with an IRT is delayed - do cladribine or HSCT not offer better alternatives on the basis that they have a better prospect of addressing smouldering MS and any latent infection within the CNS? also, how does a patient go about having their BVL checked? unfortunately, most neurologists in the north of England are highly inaccessible of even the most basic request often goes unanswered. Thanks Prof
The question about CNS penetration of IRTs is a good one and whether it is required in early or late MS is a moot point. The alemtuzumab-treated patients in the CARE-MS1 and CARE-MS2 phase 3 trials have done remarkably well over 10 years. The more pertinent question is whether or not this patient will be eligible for these treatments in his centre.
Thanks Prof, yes i read the results of the 10 year follow up. Of course, these patients were treated within 2 years of diagnosis which would not be the case for your patient here or many others facing the same choices. My understanding has always been that once MS has set up shop in the CNS then alemtuzumab is not effective. The same could be true of HSCT or Cladribine but at least the BBB penetration gives them a fighting chance and there was recent data published on the effectiveness of HSCT for secondary progressive patients. Does this not elevate HSCT and possibly Cladribine above Alemtuzumab for well established MS?
But this patient has had the advantage of neuroprotection (yes, anti-inflammatories are neuroprotective by being upstream of neuroaxonal damage) with natalizumab and fingolimod so his brain and spinal cord are not equivalent to someone who has not been on treatment or on a low efficacy DMT with breakthrough activity.
Just to make the point that this patient would not be eligible for HSCT in the UK. However, he will be eligible for alemtuzumab or cladribine based on the criteria that were used to make the decision about starting natalizumab.
Very interesting. Good to know about brain volumn and how it's measured . Thanks for the comments. My neurologist probably inwardly groans when I say I've been reading from Prof G ....
It’s all so complicated. I have never been told what my brain volume is. My EDSS is 3.5, I know that at least! After having relapses whilst on rebif and avonex, I was put on gilenya in 2016 but being immunosuppressed worries me. The alternative treatments seem daunting, that’s if I was even able to change. I wish I understood it all more so I could make the right decisions. Thanks for the information, advice and expertise you provide Prof Giovannoni, even if some of it does go over my head! 🙂
Yes, your patient IS a success story.
Others aren't so lucky. I was misdiagnosed with Spinal Stenosis 10 years ago and it was only the start of this year I got an MS diagnosis, by which time I'd been progressive for over 5 years and now EDSS 6.0. The various Doctors & Consultants missed it and an Osteopath was the first to suggest getting a head scan.
Sorry to hear your MS diagnosis was delayed or missed.
No regrets seems to be a consistent theme of these case studies....there are certainly a lot of patients on the HSCT forums that wish they had taken action earlier but the decision is so much more difficult when you're not in the 'nothing to lose' territory. A couple of questions on the IRT options - alemtuzumab has obviously been shown to be very effective in normalising BVL and pushing the disease into remission early in the course. However, it doesn't cross the BBB. Therefore, in cases where treatment with an IRT is delayed - do cladribine or HSCT not offer better alternatives on the basis that they have a better prospect of addressing smouldering MS and any latent infection within the CNS? also, how does a patient go about having their BVL checked? unfortunately, most neurologists in the north of England are highly inaccessible of even the most basic request often goes unanswered. Thanks Prof
The question about CNS penetration of IRTs is a good one and whether it is required in early or late MS is a moot point. The alemtuzumab-treated patients in the CARE-MS1 and CARE-MS2 phase 3 trials have done remarkably well over 10 years. The more pertinent question is whether or not this patient will be eligible for these treatments in his centre.
Thanks Prof, yes i read the results of the 10 year follow up. Of course, these patients were treated within 2 years of diagnosis which would not be the case for your patient here or many others facing the same choices. My understanding has always been that once MS has set up shop in the CNS then alemtuzumab is not effective. The same could be true of HSCT or Cladribine but at least the BBB penetration gives them a fighting chance and there was recent data published on the effectiveness of HSCT for secondary progressive patients. Does this not elevate HSCT and possibly Cladribine above Alemtuzumab for well established MS?
But this patient has had the advantage of neuroprotection (yes, anti-inflammatories are neuroprotective by being upstream of neuroaxonal damage) with natalizumab and fingolimod so his brain and spinal cord are not equivalent to someone who has not been on treatment or on a low efficacy DMT with breakthrough activity.
We will be using IcoBrain MS for our brain volume measurements.
https://icometrix.com/services/icobrain-ms
Several other centres are using propriety software from the MRI vendors or they do it offline using opensource software such as SIENA.
https://www.fmrib.ox.ac.uk/datasets/techrep/tr04ss2/tr04ss2/node14.html