Information for people in the UK on Tocilizumab (Ro-Actemra) injections

[Suzita76]

Hello, and apologies for not posting for such a long time.

As one of the few (and greatly privileged) LVV-GCA sufferers in the UK lucky enough to have been prescribed subcutaneous Tocilizumab injections, I have a couple of items of news.

First of all, along with my husband, I have been a participant in the UK BioBank long-term health research project since 2008, (long before I was in anything but tip-top health).

Last week we were offered the chance to take part in the Covid-19 antibody study, looking to see how many people have developed antibodies to Covid, either as a result of infection or from having been vaccinated. I’m delighted to report that we both have antibodies (having received our second dose of Pfizer vaccine 3 weeks ago), and I am still on weekly injections of Tocilizumab.

My second bit of information is that the NHS has apparently extended the prescriptions of Tocilizumab to June - they had been due to end in April.

My consultant told me early in March that my (and everyone else’s extended) prescriptions were due to end in April, and because I am asymptomatic and cannot tolerate the doses of Prednisolone that would be needed in the event of a relapse, on March 8th she had submitted an extensive plea in order to try to get me Individual Patient Funding (IPF) to allow me to stay on Tocilizumab. (It seems that she will now have to start the lengthy IPF application all over again after this latest NHS extension has run out).

[DorsetLady PMRGCAuk volunteer]

There was a previous post on this you might like to see - healthunlocked.com/pmrgcauk...

[Suzita76 in reply to DorsetLady]

Thanks for this, dear Dorset Lady. I’ve been very much out of things these past few weeks, anxiously waiting to hear from my consultant.

[DorsetLady PMRGCAuk volunteer in reply to Suzita76]

Sure it’s been a very worrying time, let’s hope everything goes smoothly with TCZ and good you’ve had both vaccines, me too.

See yesterday, UK has ordered more Pfizer for booster in autumn.

[alvertta]

Good to know. I am on actemra weekly and had 1 Pfizer shot. In Ontario we have 4 months between shots.

[HeronNS in reply to alvertta]

That four month delay is countrywide I think. I'm quite concerned about it for ppl like us on one variety or other of immunosuppressant. Perhaps they'll prioritize us for a booster when it's available.

[alvertta in reply to HeronNS]

The rheumatologists in Ontario are trying to have us moved up. But...In Ontario there are so many hot spots around Toronto that need vaccines ASAP. I doubt it will happen.

[HeronNS in reply to alvertta]

In NS there's no action on priority based on health at all, only first responders and workers in LTC. Everyone else it's age. But they did open up Astra Zeneca to age 40+ this week. Doesn't help with second doses, but it does mean we may get through the first doses faster, and that will mean starting second doses sooner. That all depends on vaccine supply.

[Suzita76 in reply to alvertta]

We had 12 weeks between our two doses and it’s certainly a big relief to know we’ve produced antibodies.

[Frewen1]

Very pleased for you, and good luck for extension

[Rugger]

I also did the biobank antibody test which was positive and my Rheumatologist has confirmed the TCZ extension, so all good for both of us at the moment!

[Suzita76 in reply to Rugger]

Excellent news. I wonder how many people on Prednisolone have had their antibody levels measured? I believe 2021 was when NICE was supposed to review their one-year -only policy for Tocilizumab for GCA, though I imagine the pandemic has caused a lot of delays.

Toc. has been such a life-changer for me, I really believe it should be offered to a lot more arteritis sufferers to see if they might benefit. The good news is there are a number of “Biosimilars” that have been developed, tested and are now trying to get approval (in the US at least), so the cost should come down dramatically once that happens (and the savings, both financial and in personal well-being terms, to be made for instance in diabetes treatment, osteoporosis consequences, depression, etc. etc. attributable to steroid use really need to be added to the equation.

[alvertta]

Why is toxy being stopped in the UK?

[Rugger in reply to alvertta]

For GCA it was decided to ration us to one year's treatment, although this has been extended because of Covid. I'm fairly sure it was to do with the cost, but as Suzita76 says, the decision was due to be reviewed this year. In the meantime, cheaper versions are being developed, so we hope that some of us will be able to be on it for even longer than the present extension.

[alvertta in reply to Rugger]

Interesting. We have not heard this in Canada. Hope they find an alternate or agree to extend the use.

[Frenchduck]

Thanks for this post as it gives me hope. I have the same condition as you and I'm on the same treatment. I also had 2 Pfizer vaccines, the 2nd one being 5 weeks ago. I would like an antibody test but I've heard mixed messages about them. Could you please let me know what kind of antibody test you had and how the antibodies were measured. I have a regular blood test next week and I could ask for it then.

[Suzita76 in reply to Frenchduck]

Hello, Frenchduck, The test we were sent through the mail was AbC-19 rapid test. It contained a sterile lancet (to prick your finger), a small capillary to suck up one drop of blood to transfer to the well in the kit. You then dropped the carrier liquid onto the blood and left for 20 minutes to read the results.

Photo of kit package

[Frenchduck in reply to Suzita76]

Thank you Suzita76. That's really helpful.