@jack97

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jack97

Ocrevus infusion and coronavirus

Has anyone actually had Ocrevus infusion cancelled or delayed? MS trust talks about having the treatment delayed however after speaking to the appointments team at my hospital Monday I am still planned to receive treatment at beginning of April. The hospital talked about speaking to consultants due to the information on MS trust website and will aim to get back to me however have not yet. I was thinking about stoping this treatment anyway due to having bad anxiety and depression after each infusion (however it’s important to say am not 100% sure this is linked and everyone reacts differently) I was diagnosed in December 2017 at the age of 20 with RRMS and luckily no episodes since initial diagnosis . Am I been ungrateful for wanting to stop treatment and just see how my body reacts without treatment? as I feel well mentally and in my MS with the exception of the symptoms that are not reversible from my first and only relapse Thanks in advance everyone I feel I get better information on here than my MS nurses

ItsMewithMS

@ItsMewithMS

There have been many recent posts on this- Use the magnifying glass in the upper left for great ones by Dominics- put in Corona and also COVID19. Within the last couple of days the advice has even been changed as you will note. Dr Boster has also put out a video on it: https://www.youtube.com/watch?v=_NpQOR7eXF8&t=354s I have a note in to my Neuro as well as we had our first confirmed case in my state (a half hour drive from me) and am due for my next infusion within a month...which is my first full infusion. So - a question in my mind too. No big concerns at this point but waiting for his advice-

Highlander

@Highlander

@jack97 Hi and welcome to the club.... To be fair to your MS nurses they have to follow a set of guidelines written in the NICE guidelines. We on the other hand can openly talk about our own experience... So speaking for myself I would keep taking the DMT..... Your fairly young still and haven't had many problems so far..... again speaking for myself I'd be having it. I'm now rocking a wheelchair.. But I'm old what do I know.... Just my opinion. Wish you luck.

jack97

@jack97

Thanks so much @itsmewithms I didn’t know about that search function and that YouTube Chanel is great Good luck with your treatment😊

DominicS

@DominicS

@jack97 - I am just over a year into ocrelizumab. It is the best tolerated of the 4 DMTs I have had. It is the most effective one too. The downside to it is that with great efficacy comes elevated risk of infection due to low lymphocyte levels. Nothing is for free. MS is for life and this wretched Covid-19 will be gotten on top of in 6-12 months. A short delay in starting now could be a v good thing. Many of us just need to sit it out and try not to get it. The lymphocytes do not come back as fast as they are knocked out. Best.

DominicS

@DominicS

@jack97 Arrgh, have just read your profile. Doh, You are in the club too! Apols. - I'd press them regarding the advice from the big-hitters. - See the prev posts here for the most up to date guidance - I am interviewing a Prof for Shift.ms today. This is an excellent point that I will try and raise. Those in limbo so to speak.

ItsMewithMS

@ItsMewithMS

Go get 'em @dominics looking forward to what you learn and say ;-)

DominicS

@DominicS

Interview done. The production team (it is a small operation, not the BBC!) are working hard on it. Expect to see it in next few days. In summary: mostly in line with the latest article by Prof G (reposted here, just scroll down a bit). The obvious caveat is that the advice is all of the professional judgement type, none of it is trial proven as there hasn't been the time, and with the dynamic nature of the epidemic the advice is likely to change as things develop. All contemporaneous and best guess!

Ray_Thomas

@Ray_Thomas

Hi All I have to admit I have been a little nervous about it - especially how well I've tolerated Ocrevus ( had 2 half and a full one in June in kings college - Denmark Hill Good to be reassured just hoping they don't cancel the Half Marathon next week..up to 20K on my training ! Ray

ItsMewithMS

@ItsMewithMS

My neuro called this morning and said it is up to me...I'm scheduled mid April and he said I could delay a month if I wish...I told him I'd let him know next week. We've just had our first confirmed cases here in the last week. At this point everyone is either over reacting (the world is ending) or doing nothing (which could just spread it around) so...I'll know more in the coming weeks if it remains in control locally or becomes a mess. I'm also not working outside the home right now so can pretty well self-isolate. That makes me inclined to go-for-it but if I pick up some work I will be nervous about walking into a new work environment without work history and experience to let me work from home