Hey all, I am new to posting on forum however have been a reader for some time. I feel like I am receiving conflicting info regarding ocrevus and covid19. My understanding is that the ocrevus surpresses the immune system, increasing the risk of getting a viral / respiratory infection. I am perplexed as to why hospitals would continue to give this infusion during this of covid19. I am concerned about getting my infusion end of April however hospital have said I will receive it as planned. Am I overreacting or perhaps I’ve misunderstood the impact of ocrevus and its not as bad as I thought. Even though I’ve experienced bronchial inflammation and trouble breathing and bad cold symptoms after previous infusion. Keen to hear your thoughts or recent advice you’ve been given Thanks Jen
Hi! I am also on ocrevus. I had a letter from my consultant saying my infusion would be delayed (I am due in the middle of April). From talking to my MS Nurse though I think it depends on how long you have been having it. She said if over a year then they believe it is in your system enough to withstand a delay. I’ve been on it since October 2018. Hope this helps x
Hi there, I’m had my first Ocrelazumab infusions in December 2019 (so more than 12 weeks ago). My MS Consultant has said that they’ll delay my next one that was due in June until September, but will instead give me an MRI scan in June to see if I need a “top-up” to tied me over. I’m getting mixed messages though as to whether I should be at home for 12 weeks due to COVID-19, or whether I can still work. I haven’t been one of the 1.5 million people who have received a letter to say self-isolate, but as the Ocrevus is still suppressing my immune system should I stay off for 12 weeks? Is anyone else out there on Ocrevus and what are you doing? Please help, from Sarah, one very confused MSer xx
HI ,I am on Ocrevus and my 3rd infusion was due on 12th March which was cancelled the day before after having routine checks (bloods and urine the previous week).I was told that 2nd and 3rd round of Ocrevus would put our immune system at higher risk of getting infections.And since starting Ocrevus I have had sinus and UTI infections .I was also told that a delay would not impact on efficacy of treatment
I was also told that i could work from home due to being in higher risk bracket (im a community psychiatric nurse )so I am on the phone and completing telephone assessments and honestly although i love my job and want to be proactive working in the NHS I know my MS/symptoms are worse under stress and I tend to worry in normal circumstances and these are "not normal " circumstances.
My sister is a front line infection nurse in Birmingham and she was adamant that i should not be in front line work due to increased risk being on infusion DMDs.My daughters and son are nurses in front line and luckily in good health and they are apprehensive however also very positive about the health of our communities but we must be sensible and take precautions where possible .
Please try not to panic (I know thats easier said )speak to your manager /occi health
As for Ocrevus infusion I am relieved that it has been delayed in this current climate even though it might have an inpact on delayin g ms progression.
Hopefully we shall in the near future all be looking back and reflecting on this awful period in time ,the important thing is to try to keep stress levels down .
All the best to every one and thank heavens for the NHS and all the services that are trying to keep the country running.
im trying to find an answer to the ocrevus and self isolating question myself. no definate answers
Thank you for all your replies. It’s comforting to know I am not alone with my ocrevus concerns right now. I will post an update once I hear back from MS Team.
Hi Mary my infusion of Ocrevus was stopped just before I received it middle of March. I had had the cannular fitted and received my steroid dose and the ward received a phone call from the nurses who had been instructed by Government to stop this treatment. Have not received any information on when it will be reissued. This seems to be linked to locality.
Hi I was due to start gettimg ocrevus in march but this has been delayed until further notice. Would advose u to NOT takr the treatment yet s your concerns arr correct and would put u at higher risk. Thanks