Does anyone have experience of having to stop Actemra after being on it for several months and the effects of that?

[Kt1943]

Hi everyone, as you might remember last time I posted I found out from MRIs that I had some suspicious lesions on my spine that have to be further investigated. I am waiting now to have a bone scan. In the meantime the rheumatologist has stopped the Actemra infusions until we have found out if the lesions are cancer. I have been going down steadily on the prednisone without relapse of the GCA so I am hoping that stopping the infusion is not going to interfere with that. I am now down to 12.5 mg. I suppose it is a matter of wait and see but I just wondered if anyone noticed adverse effects of stopping Actemra right away. Thanks.

[PMRpro Ambassador]

Sorry to hear that - hope it all turns out well.

There are people who stopped Actemra after anything from 1 to 2 years as its use is limited in the UK to 1 year although that was extended during Covid. I suppose it will very much depend on whether the GCA is already at a fairly low activity. All the best.

[Kt1943 in reply to PMRpro]

thanks for the reply. I am hopeful that, as I have been able to reduce from 60 mg to 12.5 mg that the GCA is now at a much lower level of activity. I am also hopeful that the bone scan will put fears that it could be cancer to rest and life can go back to “normal”!

[PMRpro Ambassador in reply to Kt1943]

As I understand it, the Actemra doesn't actually affect the GCA disease process - it just prevents the production of the inflammatory cytokine IL-6. It is hoped that that could lead to the remission of the cause - but it isn't entirely clear

[Kt1943 in reply to PMRpro]

That’s helpful to know. Thanks much. I have come to the conclusion with MS and everything else that there is a LOT in medicine that is not “entirely clear”! 😀

[SheffieldJane]

I stopped Tocilizumab after taking a year’s supply with gaps for infections and antibiotics. I cannot say that I noticed an impact on my ability to taper or any adverse symptoms. I think that drug had done all it could for me in enabling an event free taper from 40 mgs to 10 mgs. I have been left with Diverticulitis on-going and still have unused doses in my fridge. These symptoms were my final reason for giving up the drug. I was keen to make it work and would try it again if I had my time over. It represents our best hope so far ( for a lower steroid burden).

[Kt1943 in reply to SheffieldJane]

This is encouraging. Sorry you have been left with diverticulitis though. I do hope to be able to go back on Actemra at some point as I was fortunate, so far, in not having ny adverse effects. I guess I just have to be patient and wait and see what happens here!

[Rugger]

You mention "infusions". Were these every 4 weeks? I believe that most of us in the UK are/were on weekly injections. Every 4 weeks would give you some extra time with the drug still in your system, while you wait for your investigations. At least you have the pred as a back-up.

I was on weekly injections for 2 years until the UK funding ran out. At the same time, I reached zero pred! I didn't notice any immediate adverse effect of stopping Tocilizumab (or pred), but was started on methotrexate "just in case", so that has muddied the waters!

Best wishes to you for a good outcome.

[Kt1943 in reply to Rugger]

yes, it has been the monthly infusion for the last six months. Encouraging to hear you didn’t notice any adverse effects after such a long time on the injections. I feel less anxious about stopping it now that I have heard from several of you. Thanks for the help.

[Kt1943]

Good luck with the infusions and I hope this helps with the stopping of the treatment for the back surgery. It is encouraging to me in my situation. Hope you can get the surgery soon and most of all that it helps your back problems.