New data shows that natalizumab has an impact on chronic active lesions, including slowly expanding lesions, and indicates that natalizumab is a potentially effective treatment for smouldering MS.
I, sadly, will never get tired of hearing about ‘the real MS’ or 'smouldering MS' because I expect to have it till I die. I will always resist my diagnosis being changed from relapsing/remitting MS to secondary progressive MS because of the implications it has on treatment, or rather lack of treatment. It horrifies me when people say I should be glad when MRI scans show lack of activity. I was incredibly relieved when I had more activity, so I could have Lemtrada and get off Tecfidera. If they invent a treatment in my lifetime that reverses damage done by MS, or cures it, I want access to that.
I am totally shocked that on England pwMS are taken off their DMT when they are assessed to have progressed to SPMS. That’s absolutely appalling! Even if you are not able to ambulate as well you still have lots of neurological functions you want to keep!!! That seems like a punishment for people who are unlucky enough to have progressed. It is disability discrimination writ large!!
I have been receiving natalizumab sinc 2017. I was diagnosed in 2000.i am ambulatory and my progression is hardly measurable. The senior neurologist gave me 4 MRIs last year. I am NEDA. atrophy was my big fear as i seemed to be becoming more confused. At the end of the year i lost my husband and he had been my carer. I think that in hindsight, this was a mistake, (for him to assume responsibility). I am managing quite well now on Fampyra and sativex and betmiga. I rsponded very well to fampyra. I even managed to jog! My neurologist at that time was overjoyed. I still forget things and fall from time to time. But as my case is treated as a compassionate reaction, i still receive blessed tysabri. I am jc negative. I started natalizumab jc positive but with a very low viral load and after a year, i was negative again and have remained that way. I use a stick to help with balance.
MS spasticity pulled my body apart with great pain and i had to have 2 knee replacements as the tracking that my ,ligaments relied on was badly aligned.
Thankyou for these thoughts. I have taken great comfort from them.
Now I feel stupid stopping ocrelizumab after 2 years with low NFL and a tiny bit of atrophy at the cervical level on MRI. I did this because I progressed from EDSS 4 tot 6. I lost strength In my left leg and also my left hand. This damage was probably already in the "pipe line" Sure hope I am not getting placebo in the Perseus trial which I will be starting 13th of July. Hope BTK is worth it cause this seems like a risk
Dear Prof G, you will read on the 'Why is natalizumab not licensed to treat progressive MS?' thread, Mark Freedman's time (potentially yours too?) has been used inefficiently. A little more basic info in the 'about' section may stop this?
Ps sorry also meant to say I listen to vlogs sometimes if a subject I particularly want to understand. Would have listened to this one but am on a train and don't like earphones
Could natalizumab’s impact on peripheral blood NFL levels and chronic active lesions, including SELs, allow a reversal of the neurodegenerative pathology and allow some neuroregeneration and recovery of function?
Idea that axons might sprout and new synapses form is beyond exciting :)
Was the ASCEND population that much more disabled than that in EXPAND siponimod (more than 50% needing a stick)? EXPAND primary outcome also time to confirmed progression - same as ASCEND?
Being a young person with SPMS with advanced disability, I'm really concerned if I would be able to get my lost functions back. Professor how far do you see restorative therapies showing up in the market from now?
As someone on Tysabri with constant anxiety about PML (I'm JC negative) why don't we have at this point either treatment for it or a vaccine for JC virus?
A vaccine would of course only help those negative but that's still a significant chunk of people
Found it unusual that biogen hasn't invested in getting a fix as it's their money maker product.
“ It has never made sense to me not to be able to prescribe a DMT to pwMS simply because they needed a wheelchair as a result of a devastating spinal cord relapse.”
And yet you still follow the objectively evil and non-scientific NHS guidelines…? What exactly are you worried is going to happen to you? Having some kind of letter of reprimand put in your file? An NHS trust was recently exposed as literally letting babies die in order to keep their Caesarean section rates down and no-one suffered any consequences. The only thing the regulators ever did is send them letters. Is it worth being frightened of these non-existent bureaucratic repercussions? If a scandal ever did start it would be incredibly easy to get the public on your side through the media. Please stop following evil orders from an evil bureaucracy.
Your point about a delayed effect on EDSS cannot be overstated. Stopping inflammation today does not stop the processes underlying progression that started well before the start of anti-inflammatory treatment. We saw this in our HSCT patients. Improvements are similar delayed. However, the PML risk cannot be understated. Interval dosing was NOT used in ASCEND and is possibly still effective in RRMS but not proven. SPMS patients are typically older and therefore at greater risk of PML. Treating beyond 24 months greatly increases the risk and you are advocating for a 3+ year treatment. I am not sure that the theoretical benefits outweigh the very real risks.
I, sadly, will never get tired of hearing about ‘the real MS’ or 'smouldering MS' because I expect to have it till I die. I will always resist my diagnosis being changed from relapsing/remitting MS to secondary progressive MS because of the implications it has on treatment, or rather lack of treatment. It horrifies me when people say I should be glad when MRI scans show lack of activity. I was incredibly relieved when I had more activity, so I could have Lemtrada and get off Tecfidera. If they invent a treatment in my lifetime that reverses damage done by MS, or cures it, I want access to that.
I feel my being categorised as SPMS is allowing the neurological community to write me off “.
What would you recommend: AHSCT or medication like cladribine or other DMTS ? Mary-Ann
I am totally shocked that on England pwMS are taken off their DMT when they are assessed to have progressed to SPMS. That’s absolutely appalling! Even if you are not able to ambulate as well you still have lots of neurological functions you want to keep!!! That seems like a punishment for people who are unlucky enough to have progressed. It is disability discrimination writ large!!
I have been receiving natalizumab sinc 2017. I was diagnosed in 2000.i am ambulatory and my progression is hardly measurable. The senior neurologist gave me 4 MRIs last year. I am NEDA. atrophy was my big fear as i seemed to be becoming more confused. At the end of the year i lost my husband and he had been my carer. I think that in hindsight, this was a mistake, (for him to assume responsibility). I am managing quite well now on Fampyra and sativex and betmiga. I rsponded very well to fampyra. I even managed to jog! My neurologist at that time was overjoyed. I still forget things and fall from time to time. But as my case is treated as a compassionate reaction, i still receive blessed tysabri. I am jc negative. I started natalizumab jc positive but with a very low viral load and after a year, i was negative again and have remained that way. I use a stick to help with balance.
MS spasticity pulled my body apart with great pain and i had to have 2 knee replacements as the tracking that my ,ligaments relied on was badly aligned.
Thankyou for these thoughts. I have taken great comfort from them.
Now I feel stupid stopping ocrelizumab after 2 years with low NFL and a tiny bit of atrophy at the cervical level on MRI. I did this because I progressed from EDSS 4 tot 6. I lost strength In my left leg and also my left hand. This damage was probably already in the "pipe line" Sure hope I am not getting placebo in the Perseus trial which I will be starting 13th of July. Hope BTK is worth it cause this seems like a risk
Is fingolimod (and other mods) also effective against smouldering MS, as it prevents entry of lymphocytes into the CNS - but without the risk of PML?
Dear Prof G, you will read on the 'Why is natalizumab not licensed to treat progressive MS?' thread, Mark Freedman's time (potentially yours too?) has been used inefficiently. A little more basic info in the 'about' section may stop this?
Ps sorry also meant to say I listen to vlogs sometimes if a subject I particularly want to understand. Would have listened to this one but am on a train and don't like earphones
Re
Could natalizumab’s impact on peripheral blood NFL levels and chronic active lesions, including SELs, allow a reversal of the neurodegenerative pathology and allow some neuroregeneration and recovery of function?
Idea that axons might sprout and new synapses form is beyond exciting :)
Was the ASCEND population that much more disabled than that in EXPAND siponimod (more than 50% needing a stick)? EXPAND primary outcome also time to confirmed progression - same as ASCEND?
Being a young person with SPMS with advanced disability, I'm really concerned if I would be able to get my lost functions back. Professor how far do you see restorative therapies showing up in the market from now?
As someone on Tysabri with constant anxiety about PML (I'm JC negative) why don't we have at this point either treatment for it or a vaccine for JC virus?
A vaccine would of course only help those negative but that's still a significant chunk of people
Found it unusual that biogen hasn't invested in getting a fix as it's their money maker product.
“ It has never made sense to me not to be able to prescribe a DMT to pwMS simply because they needed a wheelchair as a result of a devastating spinal cord relapse.”
And yet you still follow the objectively evil and non-scientific NHS guidelines…? What exactly are you worried is going to happen to you? Having some kind of letter of reprimand put in your file? An NHS trust was recently exposed as literally letting babies die in order to keep their Caesarean section rates down and no-one suffered any consequences. The only thing the regulators ever did is send them letters. Is it worth being frightened of these non-existent bureaucratic repercussions? If a scandal ever did start it would be incredibly easy to get the public on your side through the media. Please stop following evil orders from an evil bureaucracy.
Your point about a delayed effect on EDSS cannot be overstated. Stopping inflammation today does not stop the processes underlying progression that started well before the start of anti-inflammatory treatment. We saw this in our HSCT patients. Improvements are similar delayed. However, the PML risk cannot be understated. Interval dosing was NOT used in ASCEND and is possibly still effective in RRMS but not proven. SPMS patients are typically older and therefore at greater risk of PML. Treating beyond 24 months greatly increases the risk and you are advocating for a 3+ year treatment. I am not sure that the theoretical benefits outweigh the very real risks.