Guest-post from an ocrelizumaber

G

I uploaded a video to theMSguide.com a few days ago talking about my concerns as an ocrelizumab patient and how the potential lack of Covid vaccine response stood to impact my life. I am five full infusions into this DMT and the fact that it appears to severely impact the ability to generate a meaningful immune response after a Covid-19 jab is administered is no fault of anybody or anything. It is what it is at the moment and no amount of wishful thinking will change this. 

However, were I to be on the brink of commencement of ocrelizumab, then it is an entirely different thing altogether. Prof G  invited me to write a piece answering the question: ‘Should neurologists tell their patients about vaccine readiness before they start a specific DMT?’ 

In the vast majority of cases, patients are given the final say in the choice of DMT, so this becomes a rhetorical question. No one wants to think they had to make a choice with one eye closed. 

Moreover, patients expect this level of engagement as a baseline, not a privileged treat, and all the patients I consulted prior to writing this simply couldn’t comprehend that their HCPs (Health Care Professionals) would even countenance not raising this in one of two ways.

Firstly, if you are embedded with a therapy, as I am, then the expectation is that my team of HCPs are proactive in identifying and contacting the entire affected cohort with the news and how it may affect them. Specifically, without alarming people, the fact that the level of protection afforded by the vaccine is probably not the same as everyone ‘normal’ and advice on what to do in the meantime, as well as the steps being taken to change this gap in knowledge so that correct guidance may be given. 

Sure, the T-cells may generate some sort of an immune response, but as far as I and the clinical team that treats me in Oxford know  – and I’d be delighted if someone can share hard info on this – there is no data to show that T-cell immunity is equivalent, 50% as good, 10% as good etc. Perhaps it is 100% equivalency to the immune response that an ‘ordinary’ person receiving a jab will enjoy? Who knows at this point in time? The only thing that is certain at the moment is uncertainty.

The second scenario is if a patient is shortly to commence treatment with any drug considered to impact vaccine response. Pre-Covid, it seems that with ocrelizumab, issues were already being flagged in some circles. Before I even started treatment, I was asked to get the following jabs: Hib+Men C (combo), Men ACWY, DPT if it was more than 10 years since my last (it was), Meningitis B (2 jabs 4 weeks apart) and a pneumococcal jab (preferably Pneumovax which is 23 valet but subject to very variable availability in the UK or alternatively Prevenar 13. 13 valent as the name suggests and the one I did get). All of this was because the neuropharmacist(s), the microbiologist(s), and the neurologist(s) were concerned that ocrelizumab or any of the mab drugs used in MS may negatively impact the recipient’s ability to generate the appropriate immune responses to vaccination. According to Dr Gabe DeLuca, the lead MS neurologist in Oxford, this protocol is now going to be adopted nationwide. Remember: this was before some bat in the Far-East even started sneezing and running a temperature later in 2019.

For both scenarios, there is also the question of the almost certain need for booster jabs in the future. The dosing schedule of ocrelizumab and the time it takes for the B-cells to repopulate sufficiently after a dose means that a patient is more likely to be off their DMT in order to stay current with Covid boosters than they are on it and treating their MS. I would prefer not to have to choose between enjoying the protection of a vaccine and what that means regarding my ability to participate in society in a relatively normal way or treating my MS. 

I’d like to think that when HCPs learn about these emerging issues, their first instinct will be to wonder how this will impact their patients and immediately try to get in front of the problem. The next logical step would be to contact patients, explaining the issue and the implications for their lives, followed by suggestions/options to address this. Sadly, in certain parts of the UK, a few will sigh to themselves and see this as an added layer of hassle.

All this comes around to the question Prof G asked me to address. Yes. Indeed. Absolutely. Neurologists should tell their patients about vaccine readiness before they start a specific DMT. I and everyone I know with MS want to believe they are making a fully-informed choice. 

I have then uploaded a second video a day ago reflecting some of the reactions to my first one from a week ago. 

As it stands today I must continue to behave as if I am unvaccinated and still as vulnerable as I was, whilst gradually most around me will, through the vaccination program, be able to resume a more normal lifestyle. A lifestyle that I also enjoyed alongside them until lockdown affected us all. Until I have an assurance that a vaccine will work for me – therapy change seems the most obvious option as a layman – then I shall have to remain locked down. And that is wrong.

Dominic Shadbolt

About the author

The MS Bloggger

30 comments

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  • Hi Dominic,

    It’s really a brutally hard time for people like us (fingolimod has a similar problem – data pending!), to suffer just as much as everyone else through lock down only to watch others joyfully go free while we don’t. I am a biologist (but not an immunologist!) so I knew this was likely coming, but I expected the protection to be a little better, as it seems to be with the flu shot. I think I am at relative peace with my DMT choice because I think realistically my MS is a bigger threat (to me! with my medical history!) than COVID.

    I am glad to see your second video has a better informed and more optimistic take. The two things I tell myself are: 1) all pandemics end, 1918 ended with no vaccinations, and it might take 4 years instead of one but it will end. 2) I expect I would regret waiting for “100% safety” (not possible) to start returning to my old life, so I am thinking about milestones and limits and ways I can protect myself. I stocked up on good masks (aka ones which really protect the wearer, kn95s, kf94s, etc) and now if I want to pop into a shop or buy a coffee, I do. And when vaccine availability in my area outpaces demand, I will get a haircut!

    It’s exhausting to basically reevaluate how to live your life every week, but I am doing my best! Thank you for riling up the docs 🙂

  • Dominic excellent post! I echo your sentiments. It is really frustrating to watch others begin to love life while we have to sit and remain cautious- or we can be choose to do more and risk illness or worse, subsequent relapse. It’s a crap choice and we need more – more support, more understanding, more information.

    • Great post Dominic! I’m in same situation, and I too am frustrated to watch others love life and say end of this mess is near. The seriousness of my concerns are not fully grasped by friends and family. No medical provider was able to coordinate my infusion schedule with vaccine, leading me to miss the ideal window for vaccination. (I had DMT and pneumococcal vaccine before starting Ocrevus therapy. My titers of MMR and others were checked. I didn’t get shingles vaccine only because the timing of non live 2 dose shingles vaccine didn’t work with my scheduled infusion.) Since any response is better than none, I had first Pfizer and waiting for next. I am not able to fully isolate because of children and domestic bliss, but my entire family uses n95 type masks and takes more precautions than others in area. However, I miss /do not attend my kid’s performances held in school auditoriums, and the few other gatherings allowed here in US state of Texas. Masks are considered optional and I’ve severely limited my outings because of it, even changed grocery store to one requiring masks. Dangerous variants are present here, and I’ve experienced significant anxiety as of late when I’m in public and others are oblivious to my risks. And sadly, do not care. As an extrovert, it is very odd to feel such anxiety just being in public. But because i have experienced aggressive MS , I am even more fearful of changing my DMD or having a relapse. MSINUS summed it up perfectly, “we need more – more support, more understanding, more information”. Desperately.

  • Is the same lack of immune response found if you begin ocrelizumab having already had both Covid jabs?

    • If you have had both COVID jabs before you start ocrelizumab then there should be protection, based on vaccinations to other things. Based on what we know from other conditions even if there is a depleted B cell response, often there is a T cell response. I have seen this over and over in a number of paper. As for level of response some response may be enough we dont know what a protective level is.

      • Are you aware of when there will be data which indicates the degree of immunity a person relying solely on their T-cell response will gain?

        In simple terms: how does it compare to that of an ‘ordinary’ vaccine recipient?

        Secondly: the issue of boosters. Were one to rely on coming off the ocrelizumab for sufficient time to generate a B-cell response it seems you’d be chasing your tail trying to achieve (annual?) boosting versus keeping on top of MS with ocrelizumab. If relying on T-cells only then back to point 1.

        How much is enough and does that happen?

          • Do you have an inkling of any research being done on this topic? Or, are we (Oc/mab patients), far too few in number to make it a worthwhile investment of time/money with all the other competing Covid research needs?

  • I agree 100% with Dominic – both his expectations of information to patients before starting DMT or existing immunosuppressive patients and also sadly his conclusions regarding vaccine readiness and therefore the implications of how he will need to continue to live until there is more information/evidence regarding vaccine response if we are immune compromised.
    Personally I would welcome answers to his questions for those of us on alemtuzumab where from what little information appears to be available we are not expected to make a vaccine response until 2 years after our last treatment when our T cells finally regenerate? As someone who had their 2nd round at end Nov 2020 (delayed from Aug because due to Covid it was too risky to give it to me in August…don’t ask) I don’t regret the decision to have the 2nd round as my MS is bad and I am pretty old and disabled and need to take anything I can that might help but now I would really appreciate being advice from my medical team rather than being left to try and guess it myself .
    PS Am immensely grateful for this blog and please do everything you can to keep it going as it is – it has been a lifeline for me over many years as a daily reminder we are not alone with our disease but that very bright people are dedicating their lives to trying to help us and just as importantly keep us informed

    • Not sure you can make that call. Alemtuzumab is out of the body within a couple of weeks what cells are left can respond. Data from Cambridge shows you can make vaccine responses within 6 months of infusion. Yes the CD8 cell response takes time to recover but not sure why two years is the relevant figure. You wont have to wait for them to go back to baseline and even when they do they are not the same as what was there before. If you have cells capable of responding when you get the vacine you will respond. B cells start to recover within 1-3 months and there are case reports of people getting SARS-COv-2 infected at around the time of infusion, there were no peripheral blood T or B cells yet they recovered from COVID-19 and they also made an antibody response.

      Importantly remember 60% of people make an anti-alemtuzumab response within the first month of infusion over 80% within 3 months and over 80-85% of people make an anti drug response within 1 month of the second infusion. Therefore the machinery is there. Lastly there is no evidence that alemtuzumab stops you responding to the vaccine (yet). I am sure that that this is on top of the agenda at Cambridge and we will get some insight very soon.

  • At this point in time and with all things considered I really think Lemtrada should be able to be offered as a first line treatment instead of Ocrevus, long term it seems much better in this situation especially if covid is endemic and requires multiple boosters etc (and also for MS generally if it works!). When i was first diagnosed it honestly sounded scary to me (& wasn’t offered anyway) but I think i’d 100% take it now. Much easier if you want a baby too…

    Regarding vaccine – I’m 3 cycles deep on Ocrevus and have had my vaccine too. Second one coming soon. Life is full of many uncertainties and while I don’t want covid etc I am living my life now as a normal person who doesn’t have MS along with government advice. I didn’t shield at any point, i’ve been careful but its more anxiety inducing to me living life worried about what may or may not happen to me. I’ve spent years with panic attacks in the past worrying about plenty of things that have never happened and i’m over that, it’s a shit way to live. I’m 31, almost 32 so my age is in my favour though. Maybe would feel differently if older.

    • I believe Lemtrada has other risk factors that I still would want to avoid. I am on ocrevus I was able to get my first Pfizer shot about 7 months after my last infusion and the second one about a month between my next one. From what I have read and what my doctor said timing it out that way and delaying my ocrevus infusion should have helped somewhat in vaccine response. Just like anything else with MS no two neurologist seem to agree about much, So I read the medical studies myself, as well as talking to my Dr. This blog has been such a help along the way!

    • “I really think Lemtrada should be able to be offered as a first line treatment instead of Ocrevus…”

      Yes..because Ocrevus does not get your brain down to normal levels of brain damage..so it
      does not totally stop disease progression. 4.55 vs. 4.12

      “NfL(10.5 pg/mL at baseline to 4.55 pg/mL at 48 weeks with OCREVUS vs. 4.12 pg/mL in healthy controls)

      • Every ML Helps 😀

        … a new slogan for ‘normal levels of brain damage’ haha
        Does Lemtrada fare better with the brain damage? I think i read on here Tysabri is slightly better than Ocrevus for the brain volume loss…

        • Yes…Lemtrada gets some down to normal brain loss..Tysabri does not..that’s why people become spms on Tysabri.

          Tysabri could possibly be better than Ocrevus on brain loss..
          I think I read that here also.
          There is a small difference over one year but it’s magnified by a factor of 10…for every decade.

  • Great post Dom! I wondered what was the time gap between your Ocrevus infusion before you had the Covid vaccine? I was advised to wait 12 weeks and did so, however there are no plans for me to have antibodies tested, so can only assume some response. I’m also steering clear of most of the population. Introverts unite 😉
    I’ve been on the drug since Jan 2020; the way I look on it is that I have MS, I want an effective treatment and things are good and stable on the drug. I don’t have Covid, so that is on the back burner for me. Due to my age and circumstances I may not be as risk averse as some, I accept that, but MS symptoms are so ghastly that is priority one for me.
    Plan to subscribe btw.

    • Hi. I had my first Covid jab two weeks after my January infusion (no.5) as I couldn’t get my neuro to coordinate with the primary healthcare where the jabs are being driven from. On a separate note: there wasn’t a woeful lack of integration, there was none at all. When I queried this with my neuro he started throwing everyone under the bus! It was everyone and everything else’s fault but his. Extraordinary attitude. The MS Nurse, the GP, the hospital IT department etc.

      I have jab 2 tomorrow.

      Things have developed further with the pre-print publication of work in the US looking specifically at the T-cell response to the Pfizer jab. Apparently, there is a good one, as speculated buy MD and Prof G amongst others.

      What I cannot discover is whether or not it isequivalent or close to the immune response of a ‘normal’ person. Yes, I have protection – to a degree. Enough to behave safely as if it is the same or similar level? I am sure the answer will come. presently though I view it as yet another encouraging step in the right direction, though not an answer I’d take to the bank.

  • This is a brilliant post and you’re not alone in your concerns.
    Could Prof G write a summary of vaccine response / risk for all DMTs?
    Is this information available somewhere please?

    Thanks!

      • Thanks for sending this link but as you say, real world data on covid vaccine response is needed. The link you’ve posted shows the inter-vaccine variance! I would be happy to be involved in an antibody study as im sure most would!

  • So is there value in switching from Ocrevus to Cladribine if Covid is going to be with us for the foreseeable future? Have been on Ocrevus for 8 infusions and am wondering if I should delay next one so as to respond to autumn booster vaccine or just quit Ocrevus, take fall vaccine and then start Cladribine. Had the vaccine, Moderna, first jab was about 13 weeks after most recent Ocrevus infusion. My neuro has NOT reached out proactively to inform me about vaccine timing and neither has the manufacturer of Ocrevus.

    • Switching: That is not for me to comment on

      Should I delay?….but if you ask this question, how long would you delay for?. Based on the information posted by prof G if you did it just before next infusion you would still not have a guarenteed response, wait a few more and the answer could still be no and if you swopped to cladribine, it would not make the B cells come back quicker I suspect. So the question becomes did the people that responded the best have returning B cells. In the study posted today the earliest vacination after cladribine was after 4 months what happens at 1-2 months.

    • My thoughts precisely. To go to cladribine from ocrelizumab you need to have failed ocrelizumab. I gather this is from MRI and examination conclusions. I am arguing that the failure is also the fact that ocrelizumab – an unknown and blameless thing – treatment now stands to (potentially) restrict the way I live because I do not enjoy a full vaccine response is also a type of failure of treatment.

      I’d much prefer to discover my fears are unfounded though I want to plan so these concerns are no longer an issue. As far as I can tell, were I to be treated with cladribine they wouldn’t be.

      We’ll see. I sacked off my neuro as he tried to blame everyone else for things. I don’t feel that part of my relationship with my neuro should be me being pissed off at the way they treat their colleagues. I don’t think that needs to be brought to my attention. And, if they are going to be that unprofessional then it causes me to wonder about how that may extend into other parts of their practice. TMI for my tiny mind.

      • Once you stop ocrelizumab you cannot magic a response until it is time for it to happenas it takes time the B cells to return

        • Exactly. I would happily take the further lockdown style wait if I knew there was an endpoint. I am not freaking out, I just find it bloody inconvenient to not know and I don’t want to unwittingly do something v risky. It is just dull having that nagging away.

          Is there any established protocol for a patient switching from ocrelizumab to cladribine? Eg: do certain thresholds regarding levels of things like B cells need to be hit before it is safe to effect a therapy change?

          Thank you.

  • Loading up on all those vaccines may not be that beneficial either, or at least there is some indication that you may not get to keep any recently acquired vaccine immunity.
    https://multiplesclerosisnewstoday.com/news-posts/2020/08/21/ocrevus-eliminates-vaccine-immunity-to-varicella-zoster-virus-rrms-patient-case-report/
    To be clear, we are talking about neutralizing antibodies, which is not the entire immune response, but very important. I was fully informed when I laid waste to my B-cells, and I did my research. Not much unbiased history to go on, and adding potentially biased does not go much further back in time. Against aggressive MS, I would still make the same choice. I am also COVID-19 vaccinated, but act as if I am not. I feel that I can reasonably gather in small groups of fully vaccinated healthy adults. My personal risk tolerance is low to moderate.
    Current low death rate for vaccinated vs unvaccinated, even in B-cell depleted MS patients, is encouraging that some benefit is acquired, and however small, appears to possibly tip the scales between life and death. Thats a good thing, despite the uncertainty. You may not be able to prevent/neutralize, but you appear to drastically increase your chance of survival.
    Patients should have all the info. There are simply a bunch of unknowns with most MABs. I feel like I was informed. IMO, It is unforgivable that you do not.

  • I share the same concerns and anxieties Dominic. I’m working at the moment and my job is physical so I have to go to work. I’m not sure what to do this winter as me and my partner would like to be able to go to gigs or go to the cinema! It feels very hard to keep safe and for people to understand that you are vulnerable even if you look healthy.
    Thanks for your video is kind of good to know I’m not the only one that feels like that.
    Take care and keep safe.

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