I have been on (self-injected) Ro Actemra (Tocilizumab) since July 2019 for LVV-GCA, and it enabled me to cease all other medications (mainly the dreadful Prednisolone) over the course of the first 9 months.( All of my blood results have been totally normal from 2 weeks after starting Tocilizumab and a PET-CT scan last July showed that there is no longer evidence of any attack of my blood vessels- hurrah!) Early in the pandemic, I received a letter from the NHS to assess my “vulnerability score”, and because I was no longer on Prednisolone, I was judged not to be especially vulnerable ( apart from being over 70), so I was surprised today to receive a letter to say that according to the JVCI and the “ Green book”, I should book a fourth Covid jab because of my immuno-compromised status.
Whilst I am very happy to get as much vaccine protection as possible, I do feel that someone else might be in greater need. (It is also making me reconsider whether or not to continue as a volunteer steward at the Covid vaccination centre!).
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Suzita76
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If it were me i'd take the offer and run! They do have plenty of the stuff - unlike some other things And it makes it safer for you to continue stewarding.
I spoke to my Physio today and she was adamant that I should have the 4 th booster. In fact she is writing to my GP. This is on 7mgs of Pred and fortnightly Tocilizumab injections - often interrupted by infections - so my immunity is pretty low. I hadn’t been called for it. I will have it. The antibodies wear off for everyone. Not sure if I would tempt fate with your voluntary work, but it does us so much psychological good - not to be underestimated ( all masked up etc).
I am sorry you have had so many infections to deal with, and I know I am really lucky that I’ve had nothing at all ( apart from a couple of mild outbreaks of Shingles, which hopefully won’t recur now I’ve had two doses of Shingrix , thanks to advice from this forum). I think I’d be a lot more concerned if I was on other biologicals that block different Interleukins, but I am still really careful (and hope my next clinic stewarding session next week will be car park duty- they’ve sent me a glorious de glow orange waterproof cape!
I’ve been down to injecting Toc. every 2 weeks since the shortages last July (and in fact, I can’t understand why they don’t suggest bi-weekly injections anyway, since the initial trials showed very little difference in results between weekly and every 2 weeks. That way, they might consider offering it to more patients!).
I really miss the voluntary work I did (Citizens Advice for nearly 7 years, before I got LVV-GCA)- you are so right, it’s very good for psychological/ mental well-being. Take care. Xxxxx
"I can’t understand why they don’t suggest bi-weekly injections anyway, since the initial trials showed very little difference in results between weekly and every 2 weeks"
Or, just as much to the point, they could let patients have 2 years for the same cost. I;ve been asking that all along too.
Do you imply that you are still on TCZ? If so, it will affect your immune system at some level (interleukin 6). I would accept whatever you are offered and have the 4th booster jab. I had mine 2 days ago. I am on TCZ and now tapering to 1mg pred.
Thank you for your volunteering. My sister volunteers in the London area - anywhere from Croydon to the Science Museum and she says it's enabled her to "get out of the house" during the pandemic! Thankfully, she's in more robust health than I am, in spite of being older!
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And it makes it safer for you to continue stewarding.
A moan and a request for advice...
Stopped Tocilizumab, CRP rising, is it a GCA flare?
Can you 'demand' Tocilizumab for GCA?
Have you been turned down for a fourth Covid jab?
