Might be of some interest especially if MTX is not to... - NRAS

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Might be of some interest especially if MTX is not tolerated.

3LittleBirds2 profile image
10 Replies

Hi

I read this on Twitter tonight and thought it may be of some interest especially if anyone with severe RA is unable to or doesn't want to take MTX along with other infusions etc (me at the moment!).

I don't totally understand it all but if everyone does...please could they enlighten me 😊

medicalnewstoday.com/releas...

Thanks

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3LittleBirds2
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helixhelix profile image
helixhelix

RoActemera is also known as Tociluzumab. There are different groups of biologics that work on different bits of your immune system. And you're generally started on the anti-TNF group, and if those don't work the T cell inhibitors, and if those don't work then this one goes for a bit of the system called IL6, (and after that the B cell inhibitors).

At the moment NICE in its wisdom will only allow it to be used alongside MTX, which limits the number of people who can tRy it. However they're now saying you'll be allowed to have it just by itself. Which is a step forward. But as doc in the article says, they're not relaxing the rules on how bad you have to be before trying biologics, so still the same qualifying regime. So only a little step forward.

3LittleBirds2 profile image
3LittleBirds2 in reply tohelixhelix

Ah ha...thank you Helix. I had Rituximab infusions in June which I believe target the B cells...still waiting to see if it's going to be a success but this drug may possibly be an option for me in the future, especially as I need to take MTX with Rituximab but I'm reluctant to do so (but that's another post!!). Thank you for the reply.

bpeal1 profile image
bpeal1 in reply to3LittleBirds2

I started Rituximab in June too however I don't take MXT and haven't done for 4 years (I couldn't tolerate it - I tried tablets and injections). I switched to leflunomide and I have continued to take this and sulphasalazine (which I was already taking before MXT).

3LittleBirds2 profile image
3LittleBirds2 in reply tobpeal1

Hi, thanks for reply. How have you been after the infusions...are you noticing any difference? I'm going to give MTX another go with Rituximab. I've saved this article to show my Consultant as it's an option maybe in the future. The success rate sounds promising too. Best wishes to you.

farm123 profile image
farm123

I had tociluzimab infusions 2 years ago without MTX but it took my white count too low. I also had Ritux without MTX but did no good for me although I was told it worked better on sero positive and I am sero neg but I think they were trying anything to try and control me and to bridge the gap until Abatacept was accepted/approved by our health authority.

I am no good with links but if you search for biologic treatments and target cells on a previous post of mine there is a diagram showing which treatment targets which cells. Farm

3LittleBirds2 profile image
3LittleBirds2

Hi Farm...thanks for this I will look up your post. How you getting on with Abatacept? X

farm123 profile image
farm123 in reply to3LittleBirds2

Abatacept took a long time to work and we added in 200mg hydroxchloroquine after 6 months to try and boost. Since stopping in March for TKR I have not been able to keep a consistent dose - could not restart until fracture (occurred during replacement) healed and then had to stop because of antibiotics due to a ?bite near to my TKR at the end of July and then mid August my WBC and neuts were low and had to miss so will have to see what happens next week. Farm

3LittleBirds2 profile image
3LittleBirds2 in reply tofarm123

Thanks Farm. I hope your WCC has gone back up and you restart it. X

beeckey profile image
beeckey

Hi i have been on Roactemera for over 2 years first infusions now i inject weekly.It has worked the best for me and as we all know you have to try many drugs before we get here.I still have lots of problems hands feet knees neck but doing better than i did with any other drug i live in Scotland

3LittleBirds2 profile image
3LittleBirds2 in reply tobeeckey

That's fantastic for you and yes so many drugs for some of us until we find the right one. I hope it continues to work for you and thanks for the reply.

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