I caught Covid on 1 March in hospital having the second half of my first Ocrevus infusion. I wore an N95 mask but had to remove it every 30 mins for oral temperature. There were 4 nurses, 7 patients in a small, crowded, unventilated room. I tested positive on 6 March and received anti virals for 5 days from 7 to 12 March. I felt fine, the disease was mild & I tested negative on 13 and 14 March. On 21 March, I fell ill again, much worse this time and tested PCR positive. It took hours every day to get through to medical teams to obtain more anti virals. Eventually on 25 March I received a call back and had antibody infusion on 26 March.
I was extremely ill and developed a secondary bacterial infection of the upper respiratory tract.
I am now really concerned about repeat infections from Omicron as it is now clear that Omicron can reinfect in under a month.
I am seriously considering stopping Ocrevus and not continuing as Omicron infections are off the scale in London and Ocrevus makes me much more vulnerable.
Has anyone else decided to stop Ocrevus because of Covid?
Have you considered Tysabri as an alternative? Apologies if you have already considered Tysabri and rejected it for other reasons (JC virus status, for instance) but it’s a good drug and doesn’t seem to impair vaccine efficacy.
If Tysabri is an option for you, that could be a good solution. You absolutely don’t want wave upon wave or bacterial and viral infections, wearing you down and proving ever harder to bounce back from. That’s not only a miserable way to live, but does your MS no good either. I’m sorry that you are having such a rough time.
I was on Tysabri for 12 years. Miraculous drug. Then tested JCV high positive ( 4.4) so no alternative but to move to another drug to avoid Tysabri rebound relapse.
I think I may go drug free as I’m 62 & my neurologist says that risks outweigh benefits once you reach 60.
Crumbs, JoolsG, that’s just absolutely rotten luck and I am very sorry for it. I’ve been on Tysabri not quite as long as you, and as successfully, and so you will understand that I can get a glimpse of how things are for you and what a total pisser it is that your stable and healthy time on Tysabi has come to an end and that the mayhem that we all fear has, so far, been the result. Maybe if the blasted pandemic had not arrived all might have been very well. It is beyond bad luck that it happened at just the time to point up the unexpected weaknesses of the otherwise excellent drug that you are now on, and that you have been so miserably ill as a result.
By the way, I’m very close to looking down the business end of a 60th birthday, and I shudder at the thought that someone might try to take my Tysabri away just because I’m now an old git. So that aspect sends chills down my spine too. I am very sorry that things have got so rough for you. I wish I knew what to suggest to you. I just wish that life was being kinder.
Thanks so much. I was devastated when told I’d tested positive for JCV after doing so brilliantly on Tysabri for so many years. Like you say, it’s unfortunate that I caught Covid while getting Ocrevus just when myB cells had been wiped out to almost zero. It was inevitable I’d catch Covid & become ill.
My head is telling me it’s probably better to stop all MS meds & allow my B cells to come back so I can fight off further Covid infection. It seems highly likely that millions will keep catching Omicron again and again with the risk of Long Covid on top of MS.