RoActemra: Hi I'd love to know how others have got on... - NRAS

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RoActemra

Alderess profile image
3 Replies

Hi

I'd love to know how others have got on with RoActemra injections - not infusions. I'm beginning RoActemra, just did the second weekly injection. The blurb says it might take 2-12 weeks to feel an improvement. Last week I thought my shoulder got a bit better but by three days after the jab I was worse than ever beforeAnd couldn't walk up our stairs (or down). Hoping this week will be better. I know we're all different but has anyone had results this early (beginning of second week)?

Thanks for reading

Susan

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Alderess profile image
Alderess
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sueathome profile image
sueathome

Hi Susan, Don't despair just yet!

I was on infusions of toci for a year, and then switched onto injections in January this year (RoActemra is the brand name for Tocilizumab, often known as toci!). I found that it took about 10 weeks to really kick in the first time, but then it really helped me a lot. When I switched to injections, I got worse again, but again after about 10 weeks it got me back to where I was. So don't give up just yet! It's a great drug if it works for you. I've not had any side effects apart from the usual low immune system that you get from any of the biologics, and I'm very careful not to pick up infections and treat things like mouth ulcers or cold sores as soon as they start to appear.

Take care, and hope it works well for you, Sue x

Alderess profile image
Alderess in reply to sueathome

Hi Sue, thanks for the reply. Today I am certainly in a bit less pain, so early signs of improvement I hope! I see my rheumy on Monday so I might ask for yet another depo injection if the improvement is going to take that long. I couldn't work like this, and my work (school ) are less than understanding.

Glad it's working for you. It does seem it will work for me, just less quickly than Cimzia or Enbrel did! Hopefully a slow onset will mean it works for longer than 5 years?

Why did you change from infusions? I chose injections to avoid spending lots of time in hospital.

All good wishes. Sue x

sueathome profile image
sueathome in reply to Alderess

Hi Susan, I had a couple of flare ups, which I thought nothing of until I was asked how I was getting on by a different doctor to my usual one. She said they'd been switching some people back. I don't work anymore (sort of retired!), and also I was worried about holidays with injections that need to be kept at fridge temperature, so I opted to switch back. I don't mind going to the hospital every 4 weeks, as I get a nice sit in a very comfy chair for an hour (plus the set up etc time) and time to read (as well as on the train there & back)!

Hope you continue to improve and it works for you. Sue x

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