@Robyn_C

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Robyn_C

Ocrevus stopped due to COVID19

I was supposed to have my first Ocrevus infusion today but it has been deferred in light of the coronavirus outbreak and I will be treated with Brabio for the time being instead. I had emailed some concerns to my hospital (The National Hospital for Neurology and Neurosurgery in London) as I was worried about the risks involved with Ocrevus and the consultants all held a meeting yesterday afternoon to discuss them. The conclusion was that Ocrevus treatment would be delayed for all patients until more is known about the coronavirus and its trajectory. My consultant is of the view that it will become widespread across the country and everybody will be exposed to it. I was also informed that the risks associated with Ocrevus in real data has proven to be higher than clinical trials demonstrated. Therefore, it could be 3-6 months until Ocrevus is back on the table due to safety concerns. I know I'm a worry wart but I was really surprised when my consultant said nobody had yet asked the questions that I had. What are everyone's thoughts on all this?

Cooper

@Cooper

I hope it will be okay....of course I thought about it, but since having my ocrevus treatment I have had the start of a cold twice, runny nose, coughing and sore throat, but within 3 or 4 days it had gone. My 2nd treatment occurred about 2.5 weeks ago only. I hope you will get the medicine that you need sooner rather than later. I sincerely wish you all the best here.

ItsMewithMS

@ItsMewithMS

I am not due for my next infusion until mid April and hope much of the risk is gone by then. I also am not in an active zone although everyone is aware of it and concerned Just got a reassuring note from my daughter's school yesterday. I'm sure the country is going to run out of sanitizer! Dr Boster just put out a video on this topic a couple of days ago where he was advising to muster on and continue treatments for the most part - https://www.youtube.com/watch?v=eo_e-d2tJeg

Delos

@Delos

I am also under the same hospital as yourself and due to start treatment next week. I was phoned by my consultant today to discuss the risks involved in the current climate and the options available. I have decided to go ahead with it as I have waited long enough for it and I know taking an DMD is a risk regardless...

Vixen

@Vixen

Hello @robyn_c, do a search for Coronavirus posts over the last week; @dominics has been posting regular updates, some from Barts hospital. The thing is, advice seems to be changing on a daily basis. my sister had her second Ocrevus infusion four days ago, and said that nobody even mentioned it. I guess it's best to err on the side of caution. My understanding currently is that people are being advised NOT to stop their DMDs unless they contract the virus. As I said though, info seems to be changing every day....

Robyn_C

@Robyn_C

@cooper I'm glad you seem to have tolerated Ocrevus fairly well. I think there will probably be a vaccine available towards the end of this year at which point I would feel comfortable going ahead. Thankfully I've been told that I will still be eligible for Ocrevus now at any point regardless, so just got to be patient! @itsmewithms thanks for linking that video, I'll give it a watch. I reckon you're right about sanitiser, I work in a Biotech company and even they are having difficulty sourcing certain items. Unfortunately, there are already confirmed cases in my town and neighbouring towns due to recent school trips to Northern Italy over the half-term holidays and people still sending their kids to school with symptoms!!! My colleagues also travel abroad for conferences frequently so I am more likely to catch coronavirus than some. @delos that's interesting that they gave you the option, although I was told a small subset of people would still get the treatment depending on circumstances. You're right that there are always risks to consider and that's something I was struggling to come to terms with anyway. Best of luck with the treatment, please let us know how it goes.

DominicS

@DominicS

@robyn_c It sure is moving fast. The same team at London conducted a survey through the Neurology Academy and decided to defer to Prof Coles in Cambridge who I gather is leading the Assc British Neuros advice. I saw the survey results and there was consensus regarding no new starters on Oc at the moment. I wouldn't say I am creating it but after 4 full doses of it I am fully suppressed and am not at all keen to catch Covid-19, as if I get it the odds are it'll kick me about quite a bit more than normal :( That is the unforeseen downside of being on one of the best drugs for the disease. Presently looking at remote cottages to rent. Seriously, I want to be a hermit for a month. @Vixen is right, there was no consensus on Monday. The Italians are informing much Western European thoughts.

Clare80

@Clare80

This seems to be the latest advice in the UK (6 March 2020): https://www.mstrust.org.uk/news/update-coronavirus-covid-19-and-multiple-sclerosis

Vixen

@Vixen

Thanks for this @clare80, nice and easy to understand!

DominicS

@DominicS

Good spot @clare80 - It is an easy read. Everyone with their expert panels - it is the same core of Neuros underpinning most of them. The MS Trust has delivered it better than most.

peterpanssister

@peterpanssister

Well, crikey, I came on here for a look at the latest info and post my query since I am also due to start my first half dose of Ocrevus (in 2 weeks). I too am under the care of a consultant at NHNN @robyn_c, same as you and others here. Couln't beliebe my eyes at your post @robyn_c! I've been struggling to decide if we have been doing the right thing (or at least the best thing?!) by keeping our child off school the past week and considering the next... We've taken the decision for the past week because of the combined factors that half of our child's class mates have just (last weekend), returned from a school ski trip that travelled via N. Italy and of course that I am (now 'was'?), due to start Ocrevus. I'm a health professional myself and work in an acute hospital environment, as does my husband. We are not given to hysteria in regard to this type of situation but even so, I was dismayed that our child's school had elected not to ask the handful of children that had travelled through the Cat 2 area, to remain at home for the 14 day self isolation period in light of how quickly the situation was evolving. I appreciate the school has followed the gov advice and my personal circumstances are different to others. Sooo, thanks so much for sharing this information, I meant to email the NHNN at QS myself this week (so I was right behind you robyn_c!) but it sounds as if they might be contacting me possibly soon anyway.. And I guess my next immediate decision is; if I won't be having my infusion in a fortnight as planned, should our child return to school next week as normal, or in spite of this would it be prudent to keep her off for another week, like a kind of reverse 14 day isolating our child from the ones who came back from the trip?! Sorry for the hi-jack there, so grateful for everyones' posts here :) Best to @dominics and you all. This whole situation has such an air of un-reality about it. I do hope you stay well. Will now watch the vid and read the link ;)

DominicS

@DominicS

@peterpanssister gosh, what a bloody conundrum. Overall, I am sure things will work out. My feeling of happiness to get in at the ground floor of Ocrelizumab is tempered as the payoff for efficacy - something I work hard to ensure I get - is potential higher vulnerability to this bloody Coronawhatnot. I am cowering indoors wishing I hadn't got rid of my shotgun now ;) Talk about unintended consequences... Take it easy.

peterpanssister

@peterpanssister

Thanks @dominics, enjoy the rugged charm (and one hopes, relative safety) of Wales :) Can't help thinking the preppers of this world are feeling rather smug just now... ;)

DominicS

@DominicS

Have done no prepping @peterpanssister as I refuse to feed the panic panic narrative. - I think another unexpected bonus is that if you are going to wear a mask then the paper ones are pretty useless so that leaves the woodworking/painting type ones from Screwfix et al. - I am looking forward to being tugged for speeding and lowering the window to the copper whilst Mrs S and I have donned Darth-Vader lookalike masks and telling the Bobby that we are self-isolating whilst offering a freshly coughed on license. I think I may get off with a warning :) - I do know how to bake bread. Flour, water, a crate of beans and some butter and I can live for weeks. - Modern times - it has to be isolated but it must have wifi!

JoJoK

@JoJoK

@robyn_c I feel for you! After all the waiting to not be able to go ahead with your treatment must be so frustrating. I’m a little bit behind you - about to go for final tests and lumbar puncture at Charing Cross Hospital next week with a view to starting Ocrevus ASAP - or not as the case may be now! I just want to get on with it...grrr! Wishing everyone the best of health with or without your DMDs. Xx

ItsMewithMS

@ItsMewithMS

I'll check in with my neuro...the line in the MS Society post "“If you are taking ...Ocrevus) you and your neurologist should consider delaying this, as these treatments can hamper your immune system.The case for waiting could be particularly strong if you are scheduled for a second or third course of treatment of one of these DMTs, where a delay of a few months is relatively unlikely to affect the clinical progression of your MS." Trying to determine where I am...I had the first two half doses last fall...due for my first full dose mid April. So is that my first full 1st course? and I should muster on or is it my 2nd? I'll have to check in for clarification...

Ray_Thomas

@Ray_Thomas

Hi All I am trying not to be alarmed - but in the mean time, try to be informed. I have mixed feelings about all of this So, for me I'm 56 and healthy ( Ran 20k this morning in prep of the London Landmarks half marathon in a few weeks ) I have had 2 doses of Ocrevus ( 2 halves and one full ) next one is in June at Kings college - Denmark Hill So, by then - I will be fine or Brown bread ... But I have have been sponsored to £800 so far for macmillan Cancer support - so I have to run it Just going to the shops this morning - it felt different ( Like a Stephen King Book ) Taking the DMD was a fairly big decision for me as after months of saying Thanks, but no thanks - the relapse I had in May last year made my mind up for me So would be annoyed to have to stop now - especially as I have been tolerating the drug very well (as a point of interest for me - after each dose , does you immune system recover ) Cheers and lets have a big hug ! Ray

Robyn_C

@Robyn_C

@dominics I'm with you on wanting to be a hermit! The problem is, would a month be long enough? :) Who knows how long this thing is gonna go on for! I'm pretty much a hermit anyway but my partner is a wedding DJ and therefore will be coming into contact with large crowds on a regular basis over the coming months, another reason I was against starting Ocrevus right now. No point worrying too much if you're already on the treatment though, from the statistics my neurologist gave me the increased risk of general infection is just under 60% BUT the increased risk of SERIOUS infection on Ocrevus is only 1.3%. I believe the advice to delay treatment is purely precautionary at this time due to lack of real-world data on how covid-19 affects pwMS on Ocrevus. - @peterpanssister I think they will probably call you but if you're needing to make decisions around your child going back to school there's no harm calling ahead to find out. They're probably working their way through a long list of patients in order of when treatment is due to happen. In terms of the school, I'd be very disappointed at their decision and the issue in my mind with it is that if any of those who went on the trip are infected and attending school they will be spreading it to others and the incubation period starts all over again. Therefore, you could wait the 2 weeks and send your child back to school if no cases are confirmed or potentially find that the lack of quarantine of those who went to N. Italy has initiated a continued spread of the virus. In that case, you'd need to decide how long you're willing/able to keep your child off school. - @jojok it's so frustrating! Couldn't be worse timing really, could it? Haha. As awful as it sounds to say this, it is somewhat comforting knowing there are others in the same boat! Best of luck with your tests x - @itsmewithms definitely check in with your consultant asap. Hopefully, they should be up to date with the latest guidance and be able to make the best decision for you. - @raythomas hi there! Certainly sounds like you're in good shape, better than me that's for sure and I'm 27! All you can do at this point is follow guidance re hand washing and try to keep as much distance between yourself and others as possible. Apparently, the lymphocytes that get killed off by Ocrevus don't start to regenerate until 3 months after the infusion and the numbers slowly increase from that point up until you have your next infusion. Then, the cycle starts again, meaning your immune system is always suppressed whilst on this treatment, particularly for the first half of each 6 monthly treatment cycle. Although, as I mentioned above, the risk of serious infection is shown to be only 1.3% higher so don't worry yourself, particularly given that you seem to be healthy besides the MS! Hugs to you and best of luck with your run.

Robyn_C

@Robyn_C

Sorry @ray_thomas missed the underscore in the tag!

DominicS

@DominicS

@robyn_c You might like to ask the neuro if the 1.6% is relative or absolute increase. Presently: the main UK neuros who contribute to the soon to issued (nothing like bureaucracy to slow things up) ABN guidelines regarding MS dugs accept that any figures are of a 'best guess' type. The risk of infections with ocrelizumab has changed both ways since that figure that they are clinging to use. A Neuro-pharmacists and the Infectious Diseases Team at Oxford won an award for research into a new protocol to reduce the likelihood of infectious disease upon the commencement of ocrelizumab. This of ocrelizumab at being a one-punch knock-out type of drug. The maintenance injections are just giving the immune system (B-cells particularly) kicks to keep it down. This is quite different from the older CRAB therapies. Their relative ineffectiveness is now exposed by the latest advice regarding Covid-19 and that is there is not really anything to be terribly concerned about if on these or starting these. The flipside and unexpected consequence of ocrelizumab being such an effective drug is that it rather lays you open to the more serious effects of Covid-19. The alarming thing is the speed of infection. The mathematical modelling is not something to look at if you need cheering up. The main thing is the response of the public authorities. Is it enough and is it soon enough? That is a very hard balance. I rather fear that we (the at greater risk) are somewhat marginalised. We know it is serious, they (the authorities) are taking and overall view. In that we are a pretty small minority. I think you are right though, is a month long enough? Our convo at home has turned to save the money and just stay in at home. If I were you though, I would eschew the advice of The Smiths and I wouldn't Kiss the DJ.

DominicS

@DominicS

If you are in lockdown then watching this is a good use of time! - https://www.oxfordmartin.ox.ac.uk/videos/risk-literacy-in-health/

peterpanssister

@peterpanssister

Hey, so, I contacted my QS consultant about my planned Ocrevus start and also the quandary regarding our child attending school or not next week (see above). They contacted me right back and said they will call me tomorrow morning to discuss. They added that decisions regarding deferring Ocrevus or not are made on a case by case basis by the treating consultant I'll keep ya'll posted..... Stay well :)

peterpanssister

@peterpanssister

Hey folks, had the convo with my MS neuro this morning and the salient points in their opinion were: * DISCLAIMER* Goes without saying, but I'm gonna say it anyway..! This information was given to ME with ME and MY specific and personal case and circumstances in mind. I am sharing it as food for thought, and potential points to raise in any conversations on this topic you may chose to have with your MS Neuro, which of course is who you should speak to when it comes to decision making around this. It's complex and one persons best choice may be very wrong for you. Sermon over :D this is what I got for ya.... while the risk of catching viruses per se is increased on Ocrevus, it is impossible to quantify the exact increase of risk with regard to COVID-19 specifically and further, the specific way in which a person on Ocrevus who did contract it would be affected (since there are as yet no available data or known cases of this). In other words, yes you are at a disadvantage but no one can tell to what extent. the risk of relapse without Ocrevus is far higher than the risk of contracting COVID-19 starting Brabio would mean being committed to this treatment option for at least 1 year. not starting Ocrevus and deferring starting it could potentially lead to not being in the eligible category to be on this treatment. This would not apply to anyone already started on this DMT. NHS England have been contacted by the MS neuros as a cohort to ask if they will extend the eligibility criteria due to this exact scenario of patients who were about to start it, deferring due to concerns around COVID-19. They await a response. The upshot for me, at this point in time is that I will plan to keep to my scheduled start on Oc (in 2 weeks time) and will also continue to reduce as far as reasonably practicable (what a great catch-all phrase that little cookie is!! - trickier in reality....) the risk of coming into contact with COVID-19 inc contact with those known to be returning from cat 1 & 2 areas of the world, hand hygiene, etc etc as per recommendations. Looks like another week off for our nipper..! ;) In all seriousness I've been mega stressed (not ideal huh?!) processing all of this today but I hope that this at least offers 'jumping-off points' for the conversations some of you may be having in the days and weeks to come, with your MS neuros. Stay well :)

Robyn_C

@Robyn_C

@peterpanssister I'm so confused now! It seems like we've been told two very different stories by the very same hospital. I'd be interested to know who your consultant is, although I think we may have different consultants from the difference in information given. - For one, I have just been started on Brabio but purely on the basis that it is temporary for 3-6 months (depending on the course coronavirus takes) with a view to starting treatment with Ocrevus asap once more is known about its safety re coronavirus. I specifically asked my neuro if I'd still be eligible for Ocrevus should treatment be delayed as this was a concern of mine and the answer was yes, because the treatment was deferred due to circumstances beyond my control and the decision taken out of my hands. This was reiterated by the nurse that initiated my treatment with Brabio yesterday, who said my consultant has identified that due to my disease activity I need to go on Ocrevus as soon as safe to do so. - Anyway, thanks for the update and I'm pleased for you that you're still on course for your first infusion! :)

Will_Middlemoore

@Will_Middlemoore

@robyn_c, I am at the same hospital as you under Prof Ciccerelli. The Friday before my first infusion (6Th) I received a call from her asking if I wanted to go ahead with it. She's 0f the opinion that my MS is very active and although she didn't try to sway me in any way I got the impression that she was happy when I made the decision to go ahead with it. I could be in the group of people who it is suitable to continue treatment plans: fairly young and previously healthy but with very active MS that is effecting me in a lot of different ways. My 2nd treatment will be on Monday the 23rd. However, since the situation is constantly changing I don't know if my MS team will decide it is wiser to delay. I plan on emailing them this weekend so they will receive it on Monday and we can make a decision based on the situation then. I think they might be delaying treatment for people who aren't having a hard time of it but giving it to those who are? That's just my guess.

frankie_lina

@frankie_lina

My husband was diagnosed with Multiple Sclerosis (MS) and had a stroke a few years after his diagnosis. His conditions left him with problems with swallowing and burning mouth syndrome ,blurred vision BUT his gait improved after starting the multivitamincare org formulas which they prescribe , he started swinging his stiff arm again and could write legible after the usage of their products . The chief of neurology at the multivitamin care always said his condition will reverse back to normal i did not believe not until last month here after his new result.