A terms and Covid vaccine

[BrianJR]

Can I continue being on Acremra when receiving my Covid vaccination?

[DorsetLady PMRGCAuk volunteer]

Similar was asked previously, but it was concerning same day for Actemra and covid vaccine - see link - healthunlocked.com/pmrgcauk...

...but I think the answer is to check with Rheumy.

If you get an answer it would be good if you posted response, would help others in same situation.

[BrianJR in reply to DorsetLady]

Thank you. If I find out I’ll let you know. My Reumy said to stay off Actemra for two weeks after the shot. I nervous about that

[DorsetLady PMRGCAuk volunteer in reply to BrianJR]

That would be great if you could let us know ......I think staying off Actemra temporarily gives the vaccine a better outcome.

[PMRpro Ambassador in reply to BrianJR]

Prof Dasgupta has said in a webinar that he would be advising his patients to hold tocilizumab/Actemra and methotrexate both the week before and up to 2 weeks after - in exactly the same way as he would for patients who catch any infection, especially Covid19 - to allow the immune system to work better in response to the vaccine (or an infection).

After all, the advice IS to stop such drugs in the event of infection and it doesn't seem to cause too much trouble in the way of flares because the effect in the body does persist. Actemra is used every second week in some patients rather than weekly.

[BrianJR in reply to PMRpro]

Thank you for your response. That seems to make good sense. I was concerned because I had such a severe and continuous (40 days) headache with GCA prior to taking my weekly Actemra injection. But i guess it’s worth the risk if Covid is the alternative.

[SheffieldJane in reply to PMRpro]

Now that’s a dilemma. Dr Sarah Mackie ( my well respected Rheumatologist) has advised me to go ahead and have the vaccine and continue as normal with Tocilizumab/Actemra. I am due the jab mid February ( I’ve had a letter). My instincts were as Prof Dasgupta advises but I have only been diagnosed with GCA/LVV for a few months. Did the professor give a rationale for his advice?

[Longtimer in reply to SheffieldJane]

Certainly is a dilemma!....

[PMRpro Ambassador in reply to SheffieldJane]

So the immune system a bit less suppressed and has a better chance of developing antibodies. There is a study that found stopping methotrexate after your flu jab results in higher immunity. He said it in a webinar for the Southend support group in December.

It is the same rationale as stopping them if you have an infection - to allow the immune system more reign. But it seems to be something some doctors haven't considered.

[Longtimer in reply to PMRpro]

Thanks for that, MT X nurse hasn't mentioned anything, O H has been given a week's notice for his jab, so will stop when notified, and resume 2 weeks later....Perhaps Mrs N may have been told but not me.....

[Alpineflower]

I have GCA and currently taking 23mg Pred daily, 15mg MTX weekly and inject TCZ weekly. Just spoken with my Rheum nurse and have been told to stop TCZ and MTX 2 weeks before Covid vaccination and restart both 2 weeks after. Just hoping no flare occurs, as seems a long time especially before the vaccination. Would be very interested in what others are being advised. I was told they are not sending out advice about this, so have to phone in for advice.

[PMRpro Ambassador in reply to Alpineflower]

That is what Prof Dasgupta said he is advising. The 2 weeks before is to allow the immune ssytem to recover a bit and the 2 weeks after is to allow the immune system time to develop the immunity. The methotrexate effect persists in the body for several weeks so stopping it shouldn't be much problem. I don't know about the TCZ. But you would be told to stop both for at least a couple of weeks if you became ill so they must be familiar with the results.

[Alpineflower in reply to PMRpro]

Thank you for the good information. I did ask about the chance of a flare occurring and was told they did not know.

[PMRpro Ambassador in reply to Alpineflower]

I think the risk is worth it - because you will probably get a flare and worse if you get Covid!!!

[BrianJR in reply to PMRpro]

Thanks. I agree. When I get my injection date I will not take the actemra the week before or the week after. Hopefully the GGA flare if it comes will not be too servers.