Thanks to @drruthdobson I’ve just received the new ABN guidance on MS disease modifying treatment during the COVID-19 crisis. This updates last week’s document shared here: https://multiple-sclerosis-research.org/2020/03/abn-guidance-on-dmt-in-the-times-of-covid-19/.ABN-Guidance-on-DMTs-for-MS-and-COVID19-APPROVED-18-March-v-3
The main change is related to NHS England having relaxed the eligibility criteria for natalizumab (Tysabri) in order to enable using the drug instead of immune reconstitution therapies (Alemtuzumab, Cladribine, Ocrelizumab) for people with highly active disease whilst the pandemic spreads.
There is additional guidance for neurologists and MS specialist on what to do if MRI is not available, or not encouraged at their Trust current time. Here’s @AlasdairColes’s technical comment that came along with the new document: “I am aware that many centres are trying to reduce the number of unnecessary MRIs … So, in our current extreme situation, if you do feel a MRI is redundant to your assessment, you might consider ticking the BlueTeq box which states ‘comparator MRI is unavailable or assessment of gadolinium-enhancement is unreliable as the patient was treated with steroids at around the time of scan.'”
The new advice also includes comments on stopping DMT, and I expect this to evolve as we understand the virus and pandemic better. Particularly if you are on Fingolimod or Natalizumab, the risk of stopping needs to be monitored closely and balanced against the risk of rebound disease, so stay in touch with your team to discuss these issues.
@neurognanapavan highlighted some imprecision regarding neurological symptoms due to COVID-19 in the new ABN document, and as one of the readers pointed out, @gavingiovannoni discussed this paper on the Blog yesterday:Li_et_al-2020-Journal_of_Medical_Virology
Finally, another plea to sign-up to the UK MS Register. Our friends in Swansea have added questionnaires related to COVID-19 so please keep visiting the site, sign-up and help tracking the virus among pwMS https://ukmsregister.org.
Prof K do you read the blog?
Evidently not every post every day (I’ve got a job to do as well:-) – Edited !
Sadly this is an overblown panic to what is essentially less deadly than flu! The world shuts down after 8,000 people die out of 6 billion, give me a break. Yes not going anywhere or doing anything stops transmission but society can’t function in that way for long. Coronavirus has been around as long as humans in various forms. You can’t stop it. I for one will keep taking ocrelizumab and as a patient doing very well on it I believe it’s my own risk to take. Having been on tysabri previously for many years and having been advised to de-risk and swoop to another DMT I ain’t swapping again. STOP THIS PANIC people die, all very sad that’s freaking life deal with it. I am not scared of death and I value my right of choice over some hysterical reaction to nature doing what it always has, creating a virus.
I’m not in panic, I’m simply providing the latest advice my colleagues have come up with for pwMS. Most patients these days are keen to get their hands on such advice immediately & directly, not (only) a digested version through their care team. It’s a backdrop for discussion, and there will be many exceptions as people like you want their ocrelizumab no matter what, whilst others listen to the arguments including the prolonged effect we’re increasingly discovering with B cell depleters. I’m not sure I can reconcile your thoughts about what “nature” should be allowed to do with your own decision to take a highly effective DMT that evidently tries – and quite effectively so – to counter some funny turn of nature that is MS.
Complacency, consistently shown to be more deadly than COVID-19.
Prof K – please can you give some advice about the present situation in NHS and MS – should pwMS be looking to not attending face to face meetings in hospitals with their neuro/consultant in favour of phone calls? The risks of catching the virus seem much greater in crowded space such as hospitals.
I’m asking as I have a meeting a the end of the month with mine, and have recently finished a treatment close to your own heart (Cladribine sc injections at Barts) and wonder if I should be seeing my consultant (someone else known on this blog) in person or try to get a phone call. I’m not sure where my immune system is right now to assess the risk myself.
Very sensible Q, and yes we are currently converting all appointments that are do not necessarily required f2f encounter to remote appointments. It’s been dreadfully slow, and one of the positives of this crisis may be an upgrade of technology that makes this more straightforward, so you may receive a bog standard phone call I’m afraid!
Many thanks. While you’re online can I also probe about follow on treatments after the first 2 years of subcutaneous cladribine. Advice and options will have changed since patients started this treatment so an update would be good to know. For example, will subsequent actions largely be dependant on lymphocyte levels? Maybe more cladribine in the future, or ocrevus, or who knows what.
At this stage we don’t have biomarkers other than MRI and cerebro-spinal fluid neurofilament light chain levels to estimate effect and failure (over and above clinical review, of course). We’re working on support for a cell-based algorithm. Follow-on treatments may well be required, timing uncertain, however in principle the entire DMT spectrum is on offer, pending eligibility criteria.
How would use that (ridiculous) little hammer over the phone?
We’ll send one to our patients and instruct them how to self-examine… Joking, this is – hopefully – transient, and we’re all looking forward to hammer away again very soon (it’s not in the least ridiculous btw).
Can I ask – despite this being the official guidance, do you still standby your post of March 11th, when you said not to delay ocrelizumab in lots of situations, because it is mainly bacterial infections that it increases, and viral response is mainly T lymphocyte driven and not B cell.
I ask as a very fit and well pwMS having had my last infusion only 2 weeks ago literally as the crisis hit. Your blog of that day really made me feel better. These official releases definitely make me feel worse that I didn’t delay it.
Unfortunately, this is not a feel-good blog, at least not always. We’re mostly looking at evidence to build our opinion, alongside our clinical experience (for the clinicians writing here). I believe you are referring to ProfG’s personal views posted on the same day that I posted the ABN guidance, and this led to some confusion. Fact of the matter is, we have a novel pandemic, and the novelty includes that we have no evidence how pwMS on DMT will fare if they contract COVID-19. Early anecdotal reports on twitter and from personal conversations with colleagues in Italy and elsewhere have been encouraging, but most people – MS or not – will manage to get through this new disease. The question is, how high is the risk of death or disability, and how much is this being modulated by DMT – nobody knows this for certain at this stage. However, there is experience from other, similar, infections, there is knowledge about the mechanism of action of the drugs involved. And there is the very personal, individual risk profile that includes the likelihood of your exposure to the virus. And then there is your own perspective on risk. All these factors play a role in the individual decision. There are no blanket answers either way.
Thank you for replying yes sorry, I meant ProfG and not yourself but I appreciate you answering anyway.
I also read the official advice as clearly stating that ocrevus increases your chance of contracting covid. Am I being too hopeful in interpreting it as not necessarily meaning you will have it more severely? You may not even answer that as you have just said the evidence isn’t there yet. But hey, I’m clutching at straws here!
Just as nobody can guarantee you have an equal chance of contracting COVID irrespective of whether you are on a DMT or not, nobody can predict what the disease course will be if you do get it. My reading of the anecdotes so far, the basic immunology of B cell depleters and the vaccination response after OCR leave me hopeful that a large majority will get away with a mild to moderate COVID. Unfortunately, we’ll probably get the data to support this prediction (or not) only after the crisis has largely passed.
The T is good at getting rid of viruses by B helps stop them occuring in the first place, but as we have no immunity to COVID there is no B cell repsonse until after you are infected so as you say the T cell and the innaate system is what you want. But we soon be in lock down I suspect and you will have a long break for your beautfiul B’s to return any way
Prof K, where can I find the remarks of @neurognanapavan that you mention in your post? Thank you for letting me know!
In an internal email 🙂