JCVI advice recommending a fourth Covid jab for LVV-GCA patients on Tocilizumab?

[Suzita76]

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!).

[PMRpro Ambassador]

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.

[SheffieldJane]

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).

[Suzita76 in reply to SheffieldJane]

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

[PMRpro Ambassador in reply to Suzita76]

"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.

[SheffieldJane in reply to PMRpro]

Yes! You only get 12 months irrespective of a weekly dose or a fortnightly dose. It’s bonkers.

[PMRpro Ambassador in reply to SheffieldJane]

A lot of NICE decisions are a tad bonkers ... Not nice at all

[SheffieldJane in reply to Suzita76]

Me too I supported the victims of crime in the law courts for 6 years. I only stopped when I couldn’t get up the long flights of stairs anymore - PMR.

[Rugger]

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!

🌹 🏅

PMR 2016; GCA-LVV 2019

[SheffieldJane in reply to Rugger]

That is super news Rugger! It sounds like you’ve actually done it and in the time frame. A bit jealous tbh.

[Rugger in reply to SheffieldJane]

"Wait and see" is all I can say. Who knows what will happen if I come to the end of TCZ and pred at the same time? I'll be sure to let you all know.