Stopping Actemra

[calicojoy41]

What happens if you decide to stop taking Actemra?? Do you have flares and them have to take more prednisone?? I have to have a hip replacement and my surgeon is worried about an infection as this could be really dangerous for me. He said they would wear moon suits in surgery but he is worried about when the surgery is over and I am back around people.

[PMRpro Ambassador]

It isn't uncommon to have to stop Actemra for a short time for infections and usually that is OK. It depends how long the surgeon wants you to stop the Actemra to do the operation and you should discuss it with the rheumy team too.

Are you on infusions once a month or weekly injections? The general advice is to stops infusions a month before the surgery, the injections 2 weeks before and then wait 2 weeks before restarting by which time the surgery scar should be healed and the risk of infection reduced.

Many patients do flare and how that should be managed depends on the medical team. Are you still on pred now and what dose? Have you got GCA or PMR?

[calicojoy41 in reply to PMRpro]

Thank you so much I get an infusion once a month I have PMR and I am down to 5mg a day. I will talk to my rheumy next week. Once again thank you so much, I love this site so much!!

[PMRpro Ambassador in reply to calicojoy41]

Have you been on it long? Difficult to say if you will flare but it shouldn't take a lot more pred and as soon as you are back on the Actemra it will be fine.

[calicojoy41 in reply to PMRpro]

I started July 2022 with the infusions got down from 12mg a day to 5mg/a day.

[PMRpro Ambassador in reply to calicojoy41]

Hopefully you won't flare badly - but once you are back on the Actemra it should be back to normal service.

[piglette]

I had a hip op and my surgeon was paranoid about steroids and wanted me on zero. In the end we negotiated 5mg which is what I was on. Everything went fine. I would not know that it is not my own hip except it does not hurt!

[calicojoy41 in reply to piglette]

I am so ready to get rid of this pain and having to sleep on my back and be so careful when ever I move and get up or sit down!

[piglette in reply to calicojoy41]

It was walking. I remember seeing the car in the distance and counting the steps to get there. Then the relief on arriving.