Here it is, hot off the pdf, and now you may be really confused, but that’s the nature of debate, and the Blog doesn’t (always) provide medical advice you should translate 1:1 into your own disease management, so take it with a pinch of salt and discuss your individual risk-benefit profile with your care team.
ABN-Guidance-on-DMTs-for-MS-and-COVID19-APPROVED-11-MarchFortunately, those of you on immune reconstitution DMTs can rely on their long term effect with delaying re-dosing an obvious option in many cases, and those on a ‘treatment-escalation’ pathway (i.e. people on injectables, first line orals or fingolimod/siponimod) and those on natalizumab not being under immediate pressure to change, unless there are other factors (disease activity, JCV positivity, etc).
I also hear on the grapevine NHS eligibility criteria for natalizumab may temporarily be relaxed, so that this may be an option for people with highly active disease even if they don’t fulfill all ‘rapidly-evolving severe (RES)’ MS criteria.
There is also concern for pwMS and their respective care teams what to do about clinical trials in the current crisis. There is no blanket recommendation at this point in time, though the ABN position will no doubt be taken into consideration when looking at the timing of new starters & re-dosing.
CoI: Multiple due to speaking engagements & consultancy for pharma, and being chief investigator of ChariotMS.
As a potential chariot trial candidate will the trial be affected?
Pertinent question. We are hopeful ChariotMS won’t be affected and that recruitment can start as planned from 1st of September (2020!).
Has your team contacted everyone about the trial yet?
I assume you’re asking re ChariotMS? The protocol is done, and R&D submissions are due soon. The process getting there has been slightly drawn out for various reasons, but in the scheme of things we’re well on track and are planning for 1st recruitment 1st Sep 2020. Once the ~20 trial sites across the UK are officially selected, we will go through our local list and contact people who expressed an interest in taking part. Stay tuned, I might soon start a little series of “ChariotMS heroes” posts introducing some of the unbelievably dedicated team behind ChariotMS – past and current. I expect some publicity around the study from ~May/June, so you certainly won’t miss it.
The ABN should have advised neuros to avoid all conferences and external business meetings for the next 6 months. In fact all doctors should be under these rules. As a patient I would want to know that my doctor has minimised the risk of exposure to the virus.
https://time.com/5801554/coronavirus-cluster-biotech-biogen-boston-cambridge/
This is a fair point….Will the AAN and ECTRIMS Go Ahead?..I predict they will be cancelled?, certainly AAN… ProfG & K won’t know what to do with their extra time :-).
However all meetings I have been involved with have been cancelled in fact I should have been in Tel Aviv today…Luckily I have missed the 14 day self-isolation, and another has gone virtual.
Re: “Prof G & K won’t know what to do with their extra time..”
I suspect I will become productive for a change 😉
🙂
Hi 👋
Confused as your previous blog said that you would resume Ocrevus treatment with your patients, and that there may be a impact of delaying treatment; less effective drug once commenced. Why this sudden change? Just trying to get clarity or maybe misunderstood, we are all just trying to understand. Many thanks 😊
Yes – only yesterday you thought ocrevus was fine to continue with.
I think something that would be helpful to pwMS and taking DMTs is to understand current thinking about when we should take extra precautions beyond hand washing etc. Do we consider ourselves part of an ‘at risk’ group that ought to take any extra steps to avoid public transport, social gatherings etc – if (when) this is recommended…? I’m currently carrying on as normal, despite commuting to London, but don’t know whether that is sensible or not.
I would very much second the request for some perspective on that. My boss (who knows I am immune suppressed, FWIW, i I had the initial round of ocrelizumab before and after Xmas) basically asked me today if I should even be out of home. My answer was I nobody really knows…
Lyndsey this is the consensus opinion of the Association of British Neurologists and is broadly in keeping with the Italian guidelines.
I think you are referring to my post from yesterday that was making the case for a more nuanced approach, based on the safety profile of the individual DMTs, risk of COVID-19 exposure and infection and personal factors of the individual patient.
I don’t think things are black-and-white or green-and-red. How can ocrelizumab and cladribine be treated in the same way as alemtuzumab? How can fingolimod and natalizumab be green-lighted as being ‘safe’ when we know a lot about their mode of actions that would suggest we need to be more cautious with them?
Also when you try and apply the black-and-white system in the clinic with individual patients you soon realise there are many issues that aren’t addressed with the guidelines. This is why I am making the case for a more pragmatic approach. They say medicine is an art and not a science and COVID-19 epidemic is a demonstration of this in action. We are in an evidence-free zone and therefore we have to rely on scientific principles and data from clinical trials, for example, to make recommendations.
Thank you for your prompt reply, it explains why some would infuse and others not. It just sounded like ALL Ocrevus patients were getting infusions yesterday I think that’s where the confusion for myself and others laid.
As you do hold a position on this decision board may I also highlight something that I came across that I was extremely concerned about and very much hope it’s not happening to everyone in the uk (I’m not due for 5 mths so don’t know myself ) I heard from a lady who had not been given an option or opportunity to display her preference for treatment and it was discontinued much to her distress. Which seems awful in a time when it seems there is not a census on ‘to treat or not to treat’ (grey areas) I’m quite shocked why this wouldn’t have been a consultative process with an informed decision given by the patient as this is how we entered into this situation in the first place. Given some infusions are going ahead (for these clinical grey areas) as discussed, surely the anxiety/stress of forcing a situation on a patient is a factor in relapses/flares. Would it be considered best practice for neurologists to take into consideration the patients wishes ?
See my comments above!
Thanks. I realised after posting that I came across a bit grumpy. I would just like to add to the thanks and say that I am very grateful for the information that the blog is putting out. I do recognise that there is no medical consensus.
It’s just a world of unknown at the moment and hard to know what are sensible steps to take. Especially with commuting, a job, kids to look after and all the other stuff I do normally. And when the shops have run out of hand sanitiser!
I had my first dose of ocrevus on the 6th March and due to have my second half dose on the 19th March. My ms is very active at the moment and 2 spinal relapses have effected my mobility to the point I now need a wheelchair outdoors. I’m still relapsing now so really don’t want to stop the treatment. Will there be a blanket withdrawal or is this up to individual neurologists?
I suspect this will be up to the individual neurologist. I sit on an NHS panel formulating general advice for patients on immunosuppressive therapies and the opinions vary a lot.
I feel like everything you said yesterday about ocrelizumab has been completely reversed by this statement! I felt so much better after reading your blog yesterday. I know you are saying the blog doesn’t convey other medical opinion, yet your name is on both the blog and this release above. So honestly, which way do you actually think?
I felt yesterday like my immunosuppression on ocrelizumab was mild/mod and I could be reassured by a lymphocyte count of >1. And that even being on the treatment might help if/when I get covid19 because of the immune storm it can cause.
Now I’ve gone completely back to thinking I’m at high risk again and should have delayed my infusion (which was last week).
Should yesterday‘s blog be disregarded?
These are consensus guidelines of the Association of British Neurologists that were formulated last week. As I said above I favour a more nuanced approach based on the safety profile of the individual DMTs, risk of COVID-19 exposure and infection, and personal factors of the individual patient. Unfortunately, there is little in medicine that is straightforward.
Hi Prof G
I was just seeing if you could let me know if R2 lamtrada does not take please for nearly a year since R1 will that be an issue ? Thanks
I don’t know the answer I think the people at Cambridge is your best bet as two cycles is standard, See Tuohy et al. 2015 https://jnnp.bmj.com/content/86/2/208.long. Only 3 people (4%) received only one treatment cycle; one developed Goodpasture’s disease and was advised against re-treatment; and two patients declined further cycles. We don’t know if they were treated or had relapses. The symbols don’t seem to be described
I was due R2 lamtrada next week. Am I right that it will be postponed? If so due to various commitments going away ( as based all trips holidays around R2) I won’t actually be able to have it till 2021. Will this be ok ?
This depends on where you are, 2021 is 7.5 months away. Some of the early studies were done with a single dose. Not sure of follow-up, you have alot of trips planned?. Maybe talk to you HCP and cancel if needed, health is more important than a holiday
We planned a number of holidays around R2 as been a rough couple of years. So felt all needed breaks and time out. I was still content to have r2 on basis i work from home so could avoid people. Think this has been taken out of mu hands though ?
Who is taking the risk; you or your HCP? Or not taking the risk? There is also the issue of reducing healthcare utilization; I am aware of at least one MS unit that is having some of their staff redeployed from their infusion unit to frontline services to deal with the COVID-19 crisis.
Hi this is useful ta 🙂 any chance you could show the pdf in a form that I could print off ?
Off to see works doctor, she needs some persuasion 😉
Thanks
Eiso
https://cdn.ymaws.com/www.theabn.org/resource/collection/6750BAE6-4CBC-4DDB-A684-116E03BFE634/ABN_Guidance_on_DMTs_for_MS_and_COVID19.pdf
I am a physician on gilenya in my late 30’s. I have had RRMS for almost 20 years. Fortunately my MS has been very benign over the past 10 years with very little MRI activity and no disability. I am having a very hard tile deciding what to do with gilenya.
Thinking about the following options:
– stay home from work to avoid seeing patients? (I don’t know how this is feasible as this pandemic is likely to continue for the foreseeable future).
– change meds? Maybe natalizumab?
– stay the course, realizing that the chances of me contracting the virus are high and hope that sphingosine receptor modulation may actually be helpful?
Thank you for any framework guidance you can provide. I have 4 young kids at home and am trying to balance the risk/benefit of treating my MS and seeing my patients.
I have a non-active RRMS. I’m on DMF, and have had low lymphocytes (0.5-0.6) for the last 3 years (2 or 3 times I got up to 0.7). Got some infections during that period. Am I correct in thinking that interrupting DMF now will probably not help raise my lymphocyte count for many months?
Ok thanks
Any ideas on the use of High doses of IV methylprednisolone during the epidemic?
Is it safe, or should it not be done?
Steroids are a difficult topic; they are quite immunosuppressive and will increase your risk of severe viral infections. I would try and avoid them. You are aware that the outcome of relapses is the same whether or not the patient is treated with steroids. Steroids just speed up the recovery from relapses by about 2 weeks on average.
The thought would need to be evidence based, we have no evidence. If you look at the asthma UK site they are not currently suggesting that you stop using steroid inhalers. That may change.
Systemic steroids a different case however see profG
My partner was due to start on ocrelizumab mid-April after coming off fingolimod. That’s now been postponed and I think she’ll be nudged towards natalizumab. Given that’s monthly infusions and she has a pretty severe needle phobia (even the thought of six-monthly infusions of ocrelizumab was scaring her), I’m fairly certain she’ll refuse it.
I’m not sure where that will leave us, aside from risking a wait of 6 months to go on ocrelizumab, which given the increased activity of her MS is scaring me. Any thoughts?
Did you or your team consider resuming Fingolimod for a few months?
We’re waiting to get an update later this week from her MS nurse (we are trying to get a call in with her doctor but I expect that might not be feasible right now) following on I guess from these new guidelines. I suppose they might be reluctant to suggest she goes back on Fingolimod given she’s had at least 3 relapses in the past year that would suggest it’s ineffective?
Agree three relapses clearly suggest lack of efficacy. It’s a judgement call then based on individual benefit-risk assessment.
Thanks – good to know; we will just have to weigh up the options and make a call. And to echo what a lot of people are saying, it’s so helpful being able to have these interactions and updates on here, I can only imagine how swamped you all must be at the moment. Thank you.
Hello
Please sent the latest information and treatment about MS.
Best regard