@Muffie

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Muffie

Ocrelizumab coronavirus

Good news BBC news today article saying that Australian scientists have discovered that the cells that fight the Coronavirus are the Tcells. Considering Ocrelizumab kills the Bcells that’s a reason to celebrate me thinks. Just had my first full dose infusion two days ago. Feeling great. Highly recommend it not just for the long term disability protection it gives but for the general feeling of well being the infusion gives and the reduction in the general day to day symptoms I have experienced.

Tanya_Trenholm

@Tanya_Trenholm

Really glad to hear this. I have my first full dose next week, and was struggling to get any clear information about the safety in the current climate. I'm now reassured, so thank you.

Muffie

@Muffie

I was chuffed to read the article too. There was another one that came in from a Professor of Neurology and MS on Twitter and it was that someone in Australia (again) with MS on Ocrelizumab had contracted the virus and the symptoms were only mild and they were recovering. When asked what is the definition of mild it was ‘like a mild cold’. Again good news. Tanya I was asked before my infusion if I wanted to delay and they advised I should consider it but I said no way. I explained that I would semi self isolate afterwards, not mix with sick people, not go to places with large groups etc and that seemed to satisfy them. So all good!

ItsMewithMS

@ItsMewithMS

I have my first full dose April 15th and have been looking for reassurance like: Dr Boster here- https://www.youtube.com/watch?v=b0UtZRPeOO0 And Here https://www.youtube.com/watch?v=eo_e-d2tJeg&list=PL3a4GpjWLtCgf_fE-lLMHkBsIuBhiNh4Y&index=1

Will_Middlemoore

@Will_Middlemoore

My second half dose is this Monday and I have also decided to go ahead with it. My girlfriend, whom I live with, is a Neuroscience PhD student at UCL in London. She heard what you just wrote and said that it's a LITTLE over-simplistic but overall it's reassuring. Having a compromised immune system will still make you more likely to catch this thing but it's good to know we will still have some defence, and the news of the Australian catching it and only getting a "mild cold", while not being proof that it'll be easy for us, is at least proof that not 100% of people who are trated with Ocralizimab will be put into a critical condition - a fear that can easily grow inside your head if left unchecked. Overall, this news has left me cautiously optimistic and good about my decision, thank you :)

Tanya_Trenholm

@Tanya_Trenholm

I wasn't given the option to delay. It was me who contacted my MS nurse a few weeks ago after I had received an email from the MS Trust regarding coronavirus and DMTs which suggested that delaying for second or third doses should be considered. My nurse then contacted my consultant who said he didn't want me to delay, but I didn't get a reason why... But, as things are progressing with corona, I am now thinking it's prob best to just go for it next week anyway, as if I delay by, say, 2 months, there might not be any nurses in a position to administer it!

Vixen

@Vixen

@tanya_trenholm and @will_middlemoore. It will just mean that you guys will have to be extra vigilant afterwards in terms of not putting yourselves at extra risk. My sister had her second dose two weeks ago and is doing well. Ironically, her biggest threat comes from the fact her two sons go to school every day! Hopefully, schools will do the sensible thing and shut soon. All the best for your treatments, keep us posted :-)

hlywln94

@hlywln94

Hello, I had my first dose early January and have been feeling good since but today it was confirmed that I had the coronavirus. I have had nothing more than mild cold symptoms up to now and hopefully that is how it stays!!

Muffie

@Muffie

I really hope it stays mild for you hlywin94 and from what has been written the mild cold symptoms are the findings so far as the Ocrelizumab apparently wipes out the baddie Bcells but not the Tcells required to fight the virus. I hope so. MS is enough on its own without any ‘extras’ to contend with. Please do take care of yourself and keep this thread posted. I wish you all the very best and a speedy recovery. Judy

DRUMmondBASS

@DRUMmondBASS

Anyone have a link to the article?

Muffie

@Muffie

Hi there. Here it is. Hope it helps. Judy. https://www.bbc.com/news/world-australia-51921403 Then part way down the article there is a heading What has been found? And a further link under the words ‘the research identified four types of immune cells, explaining about the tcells that fight the virus FROM THE ARTICLE. What has been found? Many people have recovered from Covid-19, meaning it was already known that the immune system can successfully fight the virus. But for the first time, the research identified four types of immune cells which presented to fight Covid-19.

Muffie

@Muffie

The other article about an MS’r in Australia on Ocrelizumab who contracted coronavirus and has just ‘mild cold symptoms’ is on Twitter under the hashtag #MSCOVID19 It also mentions some other dmts. Again, hope this helps anyone. Judy

ItsMewithMS

@ItsMewithMS

@dominics has put out great info on Covid 19 and Ocrevus but don't know if he is aware of this thread. I am still planning on my dose Apr 15h and have pretty much locked myself in hoping that helps ensure it will happen- Thanks for the updates everyone! @hlywin94 please keep us updated and good luck!

ItsMewithMS

@ItsMewithMS

Have any of them mentioned having people taking immune compromising drugs (for anything) take the Covid 19 test before they do to make sure they aren't asymptomatic when they receive their infusion? just something I was thinking about the other day as I need to go in for my labs on Apr 1st. It would seem like a prudent thing to do...and delay for a month if you are positive and otherwise go ahead and self-quarantine for some time.

DominicS

@DominicS

@itsmewithms - I am. If you use the twitter hashtag #MSCOVID19 there is a growing number of reports of people on many DMTs (Ocrlizumab included) that don't appear to be having their Covid-19 infection worsened by the DMT. It seems that there is a shrinking sub-set though that still cause concern for the Neurologists. People who have just finished Alemtuzumab are amongst them. The interview I am doing tomorrow with Gavin Giovannoni will be covering the whole depleted lymphocyte thing. Watch this space in 48h. I suspect there will be more. It is so damn dynamic we are learning new things every few hours!

DominicS

@DominicS

@itsmewithms - I am. If you use the twitter hashtag #MSCOVID19 there is a growing number of reports of people on many DMTs (Ocrelizumab included) that don't appear to be having their Covid-19 infection worsened by the DMT. It seems that there is a shrinking sub-set though that still cause concern for the Neurologists. People who have just finished Alemtuzumab are amongst them. The interview I am doing tomorrow with Gavin Giovannoni will be covering the whole depleted lymphocyte thing. Watch this space in 48h. I suspect there will be more. It is so damn dynamic we are learning new things every few hours!

pippa87

@pippa87

Don't the B cells make the antibodies though... Maybe without the B cells we won't be immune once infected the first time around......

ItsMewithMS

@ItsMewithMS

@dominics not a twitter person so I will just watch here for updates ;-) thanks

Muffie

@Muffie

Thoughts across the pond. I like it. thank you x Judy

Muffie

@Muffie

Hi pippa87 from what Ive read is that our immune systems are made up of Tcells and Bcells and its the Bcells that cause the damage to us MS's. I believe its something to do with when the Bcells die off which they do as an automatic life span, they shed an outer layer and it is that outer layer that is the rogue for all of us MS's. I may be barking up the wrong tree but that is how I understand it. I was a Human Resources Manager in my previous life so this is new ground for me but Ive read the immune system is made up of Tcells and Bcells but for MS's the Bcells are the problem so with ocrelizumab wiping them out that leaves us with the Tcells and from the articles as mentioned in earlier postings they are the ones that we need to fight Coronavirus. Too simplistic? maybe but this is just my thinking pattern which {obviously} suits me. I'm just trying to cope with it all. x

pippa87

@pippa87

@muffie Ahhh I see! It was just a thought I had, you're much more clued up than me! I will stick with the day job.... Although now just packed that up for a bit too😂

DominicS

@DominicS

@muffie have you considered retaining? Pretty decent explanation. The T cells thing is what is causing greater concern with Alemtuzumab. Lymphocyte levels as well. Good steam here: https://twitter.com/Brandon_Beaber/status/1237624692522897408?s=19

DominicS

@DominicS

Retraining. Stream.

Tanya_Trenholm

@Tanya_Trenholm

@hlywln94 I hope you're still doing well. I was just wondering how you were confirmed with corona. Did you get tested? I was due my second ocrevus infusion on Friday. I drove an hour to my hospital as planned only to be told that I shouldn't have it. This was based on my consultant not being contactable and the on duty registrar not wanting to sign off the prescription without further advice. My MS nurse turned up to give me this news and handed me some new research from Sweden that states that you are covered by ocrevus beyond the 6 months that it is normally expected to cover you for. But it didn't say how long beyond the 6 months. Then the registrar turned up and said she had spoken to another consultant who said it was fine to have it after all but that I and all members of my household would have to shield for 12 weeks. This was obviously a big blow for me and also made no sense. I am aware that the government has been sending out letters all week for certain categories of people to shield, but I have had nothing. My husband is a GP and is himself involved with the sending of these letters. Firstly he confirmed that it is only the vulnerable person who has to shield and not the whole household. Secondly, he wasn't sure that taking ocrevus should come under this category. It is certainly not on any list of drugs he has seen. I didn't have my infusion on Friday as planned as I want to wait to hear from my consultant. If I really do have to shield for 12 weeks, surely I should have to shield for at least 7 days BEFORE having the infusion to make sure that I do not have asymptomatic corona. Either that, or I should be tested. Any thoughts?

Muffie

@Muffie

Hi there, how disappointing for you with the confusion and expectation I imagine you were pretty annoyed as well as driving for an hour. I haven’t thankfully got the virus, my original post was based on research I had done just prior to my infusion in case I did contract it with a weakened immune system afterwards. I thought MS would come under the ‘vulnerable’ banner but have not received anything from the government either. Also I wondered whether having the Ocrevus infusion would raise the stakes and I would be included particularly with all the talk before hand. My consultant suggested I should delay but the final decision was mine. But remember, this was 18 days ago now and the situation may have changed as the figures have come in and gone up. From my personal experience I disagree with the six monthly data where you still have it in you presumably depleting the damaging B cells. I most definitely deteriorated around the end of the 5th and beginning of the 6th month. Old symptoms came back, intense internal tremors, some external on waking, numbness in both legs up to my knees, balance, walking deteriorated and the cog fog was heavy. Just 18 days after my first full infusion I have numbness in my feet and internal tremors. That’s it as of today. Now I know it is only meant to be to limit progression but many people have come forward to say they have improved overall after receiving the infusion. Anyway I digress. Apologies. Re the 12 week/7day shield I’m not sure where you live but we are all isolating anyway. Personally I’m just being extra cautious and not seeing anyone but hubby and pets, hubby gets the food in. Any deliveries get disinfected, all shopping plastic is disinfected etc wallets, credit cards, car keys disinfected. If i start going stir crazy I wear a medical mask, glasses, medical gloves and head out to the supermarket and stand 2 metres from everyone. If I assume everyone’s got it, it’s easy! Avoid, avoid avoid. So, so far so good and I hope the same goes for you too. It’s depressing yes but remember we will all get through this as it will pass like everything does. Judyx

hlywln94

@hlywln94

Hello tanya_trenholm, I have recovered well from the virus and only had minor symptoms. I was tested as I work for the NHS and had symptoms, they sent me straight to the swabbing zone. I've been in contacted with my Ms team who have said my treatment may be delayed and I'm not due it until July. I received the 12 week measures letter but was unable to get an answer as to whether or not I now have immunity.. I think we're all in the same boat in regards to the virus, everybody is winging it and we don't know much about it. In the letter I received Ocrevus was listed as one of the treatments that meant 12 isolation. I understand every Dr works differently and they are working on not much knowledge of this virus. Sorry I'm no help, hope your well xx