@Tanya_Trenholm

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Tanya_Trenholm

Ocrevus: delaying v shielding

This is a long post, so I apologise in advance. I was due to have my first full dose of ocrevus at the end of March. Having made contact with my MS team in the weeks leading up to this to check that I should still go ahead in the current climate (Coronavirus), I repeatedly got the answer back that my consultant wanted me to continue as planned as he was concerned that the risk of delaying outweighed any risk of coronavirus. I turned up at the hospital for my appointment as planned (more than an hour's drive away) having pleaded with the school to have my children (it was the first week of lockdown). When I got there, after waiting around for a while, my nurse turned up and told me that I couldn't have my infusion after all. Basically, the registrar wouldn't sign off my prescription, as she couldn't get hold of my consultant. My nurse gave me a sheet with some new research from Sweden that claimed that ocrevus provided you with cover for longer than 6 months (how much longer??). Then the registrar turned up out of breath saying I could have it after all, but that I and my whole family would have to shield for 12 weeks. I said that this would be impossible as my husband is a GP and needs to go to work. When I asked what we were supposed to do she said: "He'll have to find somewhere else to live". And with that she left. I told my nurse that I couldn't possibly go ahead under the circumstances, with no notice so I went home. She called me after the weekend to say she had got in touch with my consultant who confirmed about the shielding but also said that it would just be me that would have to shield and not the whole family. However, he agreed with this new research (which is based on another similar drug), and agreed that I could delay if I wished. I decided to delay, as even if only I shielded, it would be very difficult to do while looking after my three children and my husband going to work everyday where he is at relatively increased risk of infection and bringing it home. I've heard nothing from my team since then - it's now been just over a month. I'm sorry this has been such a long post. I suppose I just wanted to know if anyone else is in a similar situation, and, if so, have you also been asked to shield in the first 3 months of taking a dose of Ocrevus? I am just very aware that the social distancing may be in place until the end of the year and I will have to take my dose at some point. How can I do that while my husband is in a high-risk job? We don't live in the city where frontline staff have been given alternative accommodation... Also, what do I do once schools reopen and my kids go back to school?? How can I look after them if I have to shield?
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