A summary of the class of anti-CD20 therapies that includes ocrelizumab, ofatumumab, ublituximab and rituximab. Slow but steady progress in getting the MS-Selfie microsite done.
I don't think there is an age limit or duration. In the NHS we have to stop DMTs when people reach EDSS 7.0, i.e. they need a wheelchair for mobility. There is a strong argument however to derisk older people from chronic immunosuppression as the risks increase with co-morbid immunosenescence.
Off topic - i dont know where to post otherwise- i live in Wales and had more than 5 relapses in a year in 2020. Ive been dx 2021 and been on tysabri since shortly after even though my jcv titre was 3.10 from the beginning.
Can someone tell me how to get hsct because my ms nurses keep saying it's not available in Wales.
AHSCT is available in Wales. It is a standard procedure in haematology. I suspect the problem is with neurology referring you for AHSCT. In England you would have to fail natalizumab to get AHSCT. As you are responding it may make you ineligible. Please see the following link on the MS Trust website.
Not that I am aware of. There are some case reports to the contrary, i.e. of rituximab helping psoriasis. I am interested to know if you have had your B-cell counts checked? There is a 1-2% chance of you having anti-drug antibodies that could be blunting the effect of ocrelizumab. Just a thought.
This might not be relevant in the UK, but if you mean this for a broader audience, there have been a couple of papers published this year about a very increased risk of severe neuroinvasive arboviral infection while on anti-CD20s, including West Nile Virus. This seems to be getting very little attention and it could potentially be a very big deal. Neuroinvasive arboviral infection is every bit as bad as PML.
Yes, it serious. There are also several cases of enteroviral infections. These infections need to be kept in perspective as there is close to 500,000 people with MS on anti-CD20 therapies.
When Ocrevus does not succeed in slowing one's PPMS progression,
is there any way of knowing (or guessing) the reason for it's failure?
I had the first two half doses and then 'washed-out in anticipation of HSCT in Mexico? So far, so good but it's too early on to guess on any prognosis post HSCT. TheHSCT finished with Rituximab by the way, Ocrevus would be redundant at this time... but again, I'm staying fit and positive in hope's of the best outcome post HSCT
Hi Gavin- with what this is saying about Ocrevus (anti cd20’s) does this mean anti cd19/20 won’t do anything for the smouldering ms in the background that most people have???
Also the second point about S1p’s- would they be better to use after immune reconstitution therapy’s to control smouldering ms??
....................
At #MSMilan2023, future therapeutic strategies for people with multiple sclerosis was one of the Hot Topics under discussion. Several important clinical studies will be providing results within the next 2–3 years, and it is hoped that these data will ultimately guide future treatment decisions.
📌 The widely accepted anti-CD20 monoclonal antibodies, which target B cells, have shown to suppress clinical relapse for some individuals. However, these agents may not impact progression independent of relapse activity, and their size precludes penetration of the blood–brain barrier (BBB).
📌 Sphingosine-1-receptor (S1P) modulators can cross the BBB and so work directly within the central nervous system. These molecules may provide a more effective means of modulating disease activity in individuals with #MS.
📌 Bruton’s tyrosine kinase (BTK) inhibitors can also cross the BBB and have been suggested to slow disease progression. These data are currently in early stages, but suppression of the pathological features of MS has been shown in case studies.
Learn more about these developments in the latest ECTRIMS Insights ➡️ https://bit.ly/49y3FgE
Another possible question: How long can I stay on a DMT - is there an age limit?
I don't think there is an age limit or duration. In the NHS we have to stop DMTs when people reach EDSS 7.0, i.e. they need a wheelchair for mobility. There is a strong argument however to derisk older people from chronic immunosuppression as the risks increase with co-morbid immunosenescence.
Off topic - i dont know where to post otherwise- i live in Wales and had more than 5 relapses in a year in 2020. Ive been dx 2021 and been on tysabri since shortly after even though my jcv titre was 3.10 from the beginning.
Can someone tell me how to get hsct because my ms nurses keep saying it's not available in Wales.
Thabk you
AHSCT is available in Wales. It is a standard procedure in haematology. I suspect the problem is with neurology referring you for AHSCT. In England you would have to fail natalizumab to get AHSCT. As you are responding it may make you ineligible. Please see the following link on the MS Trust website.
https://mstrust.org.uk/news/health-technology-wales-guidance-ahsct
Thanks. But surely the fact that my jcv is really high counts as failing natalizumab?
No all that a high JCV index says is that you are at increased risk of PML. It says nothing about MS disease activity.
I developed psoriasis last year after 4 years under Ocrevus. You do not mention it in your text but is this not a known side effect?
Not that I am aware of. There are some case reports to the contrary, i.e. of rituximab helping psoriasis. I am interested to know if you have had your B-cell counts checked? There is a 1-2% chance of you having anti-drug antibodies that could be blunting the effect of ocrelizumab. Just a thought.
Have there been any studies on Ocrelizumab’s potential as an IRT?
There is one running at the moment in the US. We did try and get one funded on the NHS, but it was rejected :-(
Will such a trial indicate whether or not EBV works in a hit-and-run way? By my understanding it should.
If the EBV contribution to MS is not hit-and-run but on-going, Ocrelizumab will not work as induction treatment.
And that is what I expect from our sample size=1 experience with anti-CD20: Stopping treatment leads to a resurgence of MS.
Please see an older Newsletter on adaptive dosing:
https://gavingiovannoni.substack.com/p/case-study-is-delayed-or-adaptive#details
This might not be relevant in the UK, but if you mean this for a broader audience, there have been a couple of papers published this year about a very increased risk of severe neuroinvasive arboviral infection while on anti-CD20s, including West Nile Virus. This seems to be getting very little attention and it could potentially be a very big deal. Neuroinvasive arboviral infection is every bit as bad as PML.
https://nn.neurology.org/content/10/5/e200154
https://academic.oup.com/cid/article/76/6/1142/6698570
If you agree that this is as serious as it seems then it might be worth noting here.
Yes, it serious. There are also several cases of enteroviral infections. These infections need to be kept in perspective as there is close to 500,000 people with MS on anti-CD20 therapies.
When Ocrevus does not succeed in slowing one's PPMS progression,
is there any way of knowing (or guessing) the reason for it's failure?
I had the first two half doses and then 'washed-out in anticipation of HSCT in Mexico? So far, so good but it's too early on to guess on any prognosis post HSCT. TheHSCT finished with Rituximab by the way, Ocrevus would be redundant at this time... but again, I'm staying fit and positive in hope's of the best outcome post HSCT
Hi Gavin- with what this is saying about Ocrevus (anti cd20’s) does this mean anti cd19/20 won’t do anything for the smouldering ms in the background that most people have???
Also the second point about S1p’s- would they be better to use after immune reconstitution therapy’s to control smouldering ms??
....................
At #MSMilan2023, future therapeutic strategies for people with multiple sclerosis was one of the Hot Topics under discussion. Several important clinical studies will be providing results within the next 2–3 years, and it is hoped that these data will ultimately guide future treatment decisions.
📌 The widely accepted anti-CD20 monoclonal antibodies, which target B cells, have shown to suppress clinical relapse for some individuals. However, these agents may not impact progression independent of relapse activity, and their size precludes penetration of the blood–brain barrier (BBB).
📌 Sphingosine-1-receptor (S1P) modulators can cross the BBB and so work directly within the central nervous system. These molecules may provide a more effective means of modulating disease activity in individuals with #MS.
📌 Bruton’s tyrosine kinase (BTK) inhibitors can also cross the BBB and have been suggested to slow disease progression. These data are currently in early stages, but suppression of the pathological features of MS has been shown in case studies.
Learn more about these developments in the latest ECTRIMS Insights ➡️ https://bit.ly/49y3FgE