So there it is, our latest “final” advice based on (i) what we believe the evidence tells us and (ii) high-level decisions within our healthcare environment. We’ve also listened to our colleagues, in- and outside of BartsMS, and mind you there are people with strong views… Only joking!
The major change has been our Trust’s (Barts Health) change of mind in the light of the updated Green Book, chapter 14a, page 15, recommending that for people about to start immunotherapy, and those already on immunotherapy, the vaccination schedule should be adjusted for likely optimum immune response. In practice, this means that people who are considered at an excess risk of COVID-19 due to immunotherapy can now receive their 1st and 2nd dose of vaccination within a 3-4 weeks, the time window(s) mandatory for the mRNA vaccines by BioNTech/Pfizer and Moderna, and optional for the AstraZeneca/Oxford vaccine.
Whilst BartsMS are keen to foster & facilitate equity of access for pwMS to best care across the UK, and beyond, we are mindful that access to vaccination is imbalanced at this stage. Being at the fuzzy end of the lollipop on other occasions, we are fortunate at this stage that our Trust runs the NHS Covid-19 Vaccination centre, Newham, based at ExCeL (if you are local and keen, check for a volunteer opportunity here), giving our team access to vaccination slots for our pwMS, and with other neurological conditions, on immunotherapy. More than 200 pwMS have already been contacted and 150 or so vaccinated through this pathway so far – big shout out and credit to fabulous #Team11D.
Since many are asking on Twitter and here on the Blog what the vaccination in pwMS is like, we’re now also collecting information about their experience. So, if you are with our team, please fill it in and return to the team so we know what it was like for you and what we should try and improve.
vaccination-experience-questionnaire_JM_KSMD will shortly give you an update on what’s happening at the serology front – lots of teams are now hunting the same information, i.e. what is your B & T cell response to SARSCoV2 vaccination after treatment with B-cell depleters and other DMTs, so watch this space, and if you’re local email us on mscovid19ab@qmul.ac.uk to join our study.
@KlausSchmierer
Thank you so much to the team at Barts. So impressed how fast and organised everything has been. Can’t even imagine how much of a headache it’s been to work out everybody’s best timings.
Thank you Hannah, we’re trying to work as a team in the best interest of pwMS; not always, but mostly, successful:-) This one is very much credit to the hard-working people on our Daycase & Research Unit (11D at the Royal London Hospital), our neuropharmacist and MS nurse specialists.
You do have the best team 🙂
🙂 Fiver in the post and a big hug for Ted.
Thanks for the update, although the language in this post is confusing. So by “excess risk due to immunotherapy” you are referring to individuals not on any of the dmts in the bottom 5 rows of your table?
Asking as a disgruntled hcw on dmf who had the first dose of a Pfizer vaccine 8 weeks ago.
Yes, correct. I guess changing the schedule for HCW will depend on vaccine availability. I had my first jab on 24 Dec, awaiting 2nd.
Thank you – I’ll sleep easier with that bit of info. Have a nice Sunday
You need to read your email and go to Leyton…….Jab and DrAngry’s for tea and biccies….However, maybe ProfK read that if you are over 12 weeks (12-24) you get a bigger antibody response….Problem is the data is only available for AZ:-(.
However, take some bloods ProfK you may be the longest interval between doses in the World….What a claim to fame:-(….Did the vaccine response persist for 14 weeks…I bet it didn’t
P.S. Just realised I am not responding on todays post…..but 6 weeks ago. Sorry for being a plonker
Hi Prof K, thanks so much for this. Is it the same schedule for Rituximab as Ocreliziumab?
Yes, same principle. Having said that, we need to be mindful that “some” immunity is better than “none”. What it means is that waiting 3 months in a situation where COVID is rampant equals 3 months of no protection at all, whilst immunisation say 1 month after you infusion would probably provide “some” immunity (albeit probably not as effective as with only 1 month delay). Bottom line is we need more data to support (or alter) our advice, which is why we ask everybody in east London or Essex linked to our service to join our serology studies (mscovid19ab@qmul.ac.uk).
Hello Professor K
I am under The Royal London. I had my first dose of the Astra Zeneca vaccine at the Excel centre on the 5th February. I am due my first full dose of Ocrevus on the 1st March. This is less than a 4 week gap. Is this ok, or am I likely to be contacted and my infusion moved back a few days?
Many thanks Rachel
I’ll touch base with your care team to confirm, but expect on balance it will be best to go ahead as planned.
Hi Rachel, I am the same as you, and I’m having a 3 week gap between 1st dose and next infusion. Infusion tomorrow. At first it was a two week gap, then it got moved to 3 weeks. It sounds like the neuros had differing opinions 🙂
Yes everyone one has opinions and they are not all the same, the neuros come up with their ideas, then someone bangs their heads together, often Freya and Grace but sometimes others, and then agree on something, but in vaccine land these ideas gey changed all the time
I have my second “jab” (Pfizer) tomorrow Feb 14th and that is 21 days after my first. My last Ocrevus infusion was Dec 3rd. I am hopeful that this will be “good enough”. It was offered (live in US) & so I said yes – all in consultation with my neurologist. Reading this has me a wee bit concerned. Le sigh. Thoughts on what to expect with a something is better than nothing scenario?
The recommended gaps between infusions and vaccines are currently based on circumstantial evidence – the studies on immune response with the SARSCoV2 vaccines whilst on DMT are underway, which is why your ‘something is better than nothing’ may yet come out on top. It is also very much dependent on where you live, and what your exposure is like.
Thank you ProfK! Very helpful. Off now to get the “jab”……do wish I could get a test that would tell me how much efficacy I actually gained with being vaccinated. Does such a test exist?
There are now more tests for COVID 19 than you can shake a stick at. Some of the tests you can purchase but we made our own and some we are currently making. Please read my post tomorrow about efficacy of vaccination
would a first covid vaccine, then Ocrevus 25 days later wipe out whatever protection the covid vaccine gave?
Ocrelizumab has a tiny impact of CD4 and CD8 cells and there the cells that help antibody production, macrophages and anti-Viral T cells should be OK. The first dose makes antibody producing cells This will happen been 6-14days and these do not express CD20 and therefore will not be killed by the ocrelizumab so it should not wipe them out. However we will only know when we do it.
Hello ProfK,
as we are not living in the UK we cant participate in the serostudy i fear?
Got my second Pfizer jab two days ago and had flu like sympthoms and some
fever (38.3 high point).
I get my next Ocrevus in 4 weeks now (last one was in October). Just because of the sympthoms is it right to say that an immuneresponse has happened?
Thank you!
Sounds very likely to me. Thanks for sharing your experience, really appreciate it.
Sad to say that the reactogenicity is not linked to immunity, so you can have reaction with a limited immune response. Ol people give immune response and dont ge the reactogenicity
thank you ProfK and Mr Mouse for the answer – so to be sure I need to do a serological test right? is a common serological antigen test enough? – i guess i might need a more specific one? thank you for helping! and should i wait just another 2 weeks before doing it?
Thank you🙏
A big fan of the 11D team here 🙂
But I just wonder whether you will recruit for the antibody trial, many people who are on Pathway A for ocrelizumab as 11D are (so far as I’m aware) prioritising those for vaccination who are due their 6 monthly dose in the next few months – at least that was the case 3 weeks ago. So unless someone postpones their next ocrelizumab to have 2 doses, most will be either new patients or Pathway B….
I might not be up to date so just a thought from afar.
We’re not randomising to either pathway A or B, and we’re not only interested in ocrelizumab. We’re keen to explore the immune response in anybody compared to baseline, i.e. take bloods before and after getting their jab(s), and then work out in the analysis what impact timing (and type) of both vaccination and immunotherapy have on the type and magnitude of response we get. In the current situation, it is near impossible to standardise timings, but we’ll be able to investigate in the analysis the impact of various confounders.
It is not a trial, it is more of a service…it was started as a seroprevalence study to see who had been infected with COVID and we adapted our anti-drug antibody test to anti-covid-19 test and then to use on blood spots. We were too slow off the mark, as we had to finish off our alemtuzumab studies before we could think about covid. Beleive
it or not we were made to get a grant to do COVID work. We didnt need it, the reagent cost $260 to make (externally sourced in USA to our design) and within 2 days of having the reagent we produced enough for 2 million tests and if we could have got out chemistry department involved straight away this could have been 70 million tests in 2-3days. Using the assay measure we can IgG, IgA, IgM. We can also detect in saliva e.g. spit on a q-tip but there were too many variables for us to do an optimise given the lack of resource and Health and Safety stuff.
He had planned to work with the MS Register but after the funding that we had been offered (a different charity) was withdrawn, due to the finances of the donor, we had to intially focus on our local site. ProfG and Kit raised money so we could buy kits and send them out. I believe we have over 150 volunteers even before we knew anything about vaccines. The team in 11D have engaged with the scientists and they have been watching the science journey. We have been to 11D to be be bled etc. for this and another related study too. I have been giving blood for the past 6 months as have another 150 people, then there are the people with MS who are giving the blood spots. The plan was to avoid pwMS coming into the Royal London.
However, it can now serve as vehicle to monitor vaccine responses. We have miniturised the assay to work off a punch from the blood spot and a fiftheth of a drop of blood. After this bit of COVID, we will adapt this back to our MS work to provide remote testing. The blood spot can work whether you have MS or not and whether you are treated or not. In terms of people with MS getting vaccines, the selection have done on percieved risk where people on most depleting agents were contacted first, and the choice of vaccine either what was available in the sites where vaccine is given. As to the schedule of dosing we have adapted to try optimise vaccine response whilst getting people onto vaccine in the hope that some response is better than none. For most DMT there is little concern that a vaccine response will develop but for the depleting agents there was some attempt to optimise a vaccine response. When we started doing this there as no information of cladribine and in march 2020 there was no peer-reviwed ocrelizumab data. We have had to develop dosing schedules that we felt offered a better chance of seroconverting and also maintaining treatment benefit. Ocrelizumab has the most awkward dosing schedule due to the continouous 6 month dosing and the most percieved risk of not making an antibody response. Bassed on the data of B cell repopulation I could make the argument of stopping treatment for 12 months and vaccinating at about 8 months when the naive cells would recover, but I am not a treating physician and were do not want to risk relapse due to lack of therapy. I think the original view was to vaccinate before any dosing when the 3/4 dosing schedule was in place but remember it has been changed to 12 weeks and the split dosing around vaccination was inpart created by the dilema of one of the bloggers whether to vaccinate and then postpone infusion or infuse then vaccinate. The delay allows the best for B cells to repopulate and for T cell and Plasma cells response to be generated before anti-CD20 infusion knowing that these will not be particulaly targeted by the treatment. In the past couple of weeks I think we had to change plans numerous times, sometimes within a days creating a headache for the nursing staff. We have been as fluid as possible.
Thanks – that was interesting.
There was absolutely no criticism intended, particularly as I can imagine it has been a complete administrative nightmare in changing circumstances, and I understand it’s not a randomised trial and wider than ocrevus. I only mentioned it to see whether perhaps there were a few ocrevus patients on the books of 11D who might be keen to take part who could fit in their two doses of vaccine before their next dose is due, who wouldn’t perhaps have been picked up by the latest offers.
I’ll be watching your findings with interest – I donated to both the fund raising and am now sending off blood too 🙂
I was on Copaxone and stopped at the end of October as it was not working for me any more (new lesions) and also gave me lipoatrophy. I started Tecfidera which I took on the lower dosage for 1.5 months till the middle of December. I had to stop because of the bad side effects. Now I am waiting to first have the vaccine so I can start on Cladribine or Ocrevus, but it will probably not be until Match that I will have the first vaccine dose, which means that MS treatment will have to be pushed for the end of April perhaps or even May. Is a gap of 6 months not protected by a DMT (since after stopping Copaxone) too long to wait to start treatment? Should I just start with MS treatment asap and not wait for the vaccine? I don’t have new clinical symptoms at the moment, but I am scared of a relapse. On the other hand if I don’t have the vaccine I will have to be extremely careful while on Cladribine which means possibly self-isolation (not very pleasant). Is there a good approach to this? Thank you beforehand for your reply.
The neuros will have to anwer the gap question, but vaccine access depends on where you live tier 5/6 is being done already in some places
I live in the Netherlands and here things are very slow. They say that for now people with a medical indication are planned for March, but it might take up to May or June depending on how fast or slowly things go.
My doctor initially recommended that I start with the MS treatment first, but now she says it might be worth waiting for the vaccine.
It’s just that it’s hard to judge what is best to do in this case.
You cant wait forever and sadly the Netherlands have been very slow
Hello, I have just been diagnosed with RRMS and am keen to start treatment ASAP, so i contacted my GP about getting vaccinated and had my first dose this week. However, current practice is two wait for 12 weeks for a second dose – based on this advice, should I be asking to get my second dose sooner??
depending on what you are being treated with this may be the best approach point your GP to the green book chapter 14a. For some treatments it may not matter
Thanks – I’m seeing my neuro on Monday to hopefully map out a treatment plan so I’ll see what she says. Also can I just say this blog has been a great discovery – I work in the life sciences and it’s fantastic to see researchers and clinicians engaging and communicating like this
As a scientist, I was just about to make the same point about how fantastic it is to see clinicians and scientists working so well together. As I read to the end of the page I saw some one had beaten me to it. The scientist-clinician relationship at Barts should really be the model for many other groups. As should their blog for patients engagement and communication.
Thanks – this interaction is a big part of why I enjoy working at this place, with this team.