GCA taper

[LRevell]

I’m currently on Actemra injection once a week after 1 1/2 years. I haven’t had any flares and my assistance will run out. I would like to get off of it entirely if possible.

has any one had a experience of getting off it and staying off?

[PMRpro Ambassador]

Are you only on Actemra? Are you also on some pred?

You will only be able to get off Actemra entirely if the underlying autoimmune cause of the inflammation has burned out. If you are still on some pred, you may need more pred. But you can only find out by stopping the Actemra and waiting and seeing what happens.

In the clinical trials some patients were able to stop Actemra having also stopped pred and remained in remission for some considerable time but there is no fixed expectation of how long it will be. Some relapsed sooner than others.

[LRevell in reply to PMRpro]

Yes, I’m on Actemra only no Prednisone. I know that this disease will never go away completely but the Actemra is making me woozy in the head. Been having a problem falling asleep lately and in general feeling weird. Will be seeing my Rheumatologist in a week. I was just wondering if anyone had any issues getting off it or how it’s affecting them. Thank you for your reply!

[DorsetLady PMRGCAuk volunteer in reply to LRevell]

I know that this disease will never go away completely

Not sure that’s always strictly true….although I say mine is in remission [as an insurance policy]. It’s certainly been fast asleep for 8 years..and hoping it stays that way.

[PMRpro Ambassador in reply to LRevell]

" know that this disease will never go away completely "

It depends how you look at it. It goes into remission after a few years- especially GCA, PMR is a bit more resistant - and most people remain GCA-free longterm. The PROPENSITY remains - nothing changes the genetic side and your own history of "immune insults" is just added to so it can happen again but in our experience it is pretty rare for GCA to develop a second episode and in over 15 years on the forums I think I have only come across 2 people with a second round of GCA.

Getting off Actemra isn't the problem, unlike pred you just stop taking it. Whether the GCA is fully in remission is another question. Actemra is just a very effective steroid-sparer, it has done nothing to the actual disease process, so without it, the inflammation can just build up again, You were at least in the 50% who are able to get of pred entirely, GCA can have up to 3 mechanisms that underlie the inflammation and if the others are involved, Actemra doesn't work on them. you still need some pred.

There aren't that many who are entirely off Actemra except in the UK because of the policy there of only making it available for a year. Certainly those patients haven't had problems stopping Actemra - but most of them have required higher pred or pred again. A group of UK rheumatologists have compiled a study about relapse after stopping Actemra in that way to submit as evidence that it is required for longer.

This

pubmed.ncbi.nlm.nih.gov/309...

is a 2019 paper looking at relapse rates which concludes

"The data show that a 52-week treatment with tocilizumab induces a lasting remission that persists in half of the patients after treatment stop."

This is from 2023 and found a similar relapse rate

ncbi.nlm.nih.gov/pmc/articl...

and this is Vanessa Quick et al's paper I mention

academic.oup.com/rheumatolo...

which says "By 6, 12 and 24 months after stopping qwTCZ, 21.4%, 35.4% and 48.6%, respectively, had relapsed, requiring an increase in prednisolone dose to a median (IQR) of 20 (10–40) mg/day."

You are more likely to relapse sooner if you had any relapse while on Actemra but about half of patients do not relapse. There is however no way of predicting who will relapse or when.

[SheffieldJane]

I stopped Actemra after approximately one year. I had abdominal pain and was eventually diagnosed with Diverticula Disease. I came off Actemra without tapering and experienced no ill effects. I am currently stuck on 4.5 mgs of Pred. Actemra helped me to get down from 40 mgs to 10 mgs. It has taken me a long time to get down to my current dose.

[Quintius]

I came off Actemra after 6 months. No side effects. Still on prednisone.

[Frenchduck]

Hello LRevell

I came off Actemra (RoActemra as it's called in France) after approximately 3 years, without pred. and after tapering the injections to one every 4 weeks. As I felt well and my CRP remained at zero my doctor agreed to let me stop to see if the GCA with LVV had gone into remission. In a matter of weeks the CRP started to rise and it continued to rise for 4 months. At this point I had a PET scan which showed that the disease was still there. I started immediately back on Actemra along with 35 days of a tapering programme of pred. That was September 2023. Now, a year later I have spaced out the injections to one every 3 weeks. I will have another PET scan in October and if the signs of inflammation are gone the plan is for me to continue taking the injection once every 4 weeks for at least another 2 years.

I hope this information helps and that whatever you decide is successful.