NRAS
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Tofacitinib

Anyone experienced this treatment? My RA consultant mentioned it last week when I attended for an emergency x-ray for my hip.

I experienced a flare up at the same time as my hip issue which it turns out to be a condition called Avascular Necrosis caused by blockage of blood supply - caused by steroids. Tissue, cartilage and bone all dead....🙁 MRI now in offing.

So discussion took place on wether my current Bioligical Tocilizumab is perhaps loosing it's effectiveness....

One suggestion was Tofacitinib. Having read the side effects I note among the extensive list that cancer could be one.

Has anyone any experience of this drug?

Thanks

Chez

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This is what my rheumy suggested for me but she called it JAKS. She said the healthe board in Wales has just taking the drug on this month.

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I'm in Scotland so I guess it's been approved here already.

What else have you been on?

I've had Enbrel Rituximab and Tocilizumab.

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I had avascular necrosis in both hips due to steroids as well. I had them replaced 10 and 11 years ago. I currently take tocilizumab. All of the biologic treatments list cancer as a possible side effect so you have to push that to the back of your mind and think about the benefits 🙂

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Hi Rith

Yes I will probably need a hip replacement as well. MRI will show extent of damage no doubt.

I am still on Tocilizumab and I see my consultant again next week for a knee injection and a review so I'll be questioning him further.

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Hi Chez,

tofacitinib is a new type of DMARD called a JAK inhibitor and is currently under review by NICE to be used here in the UK. It is already used in the States so hopefully someone from there can answer your question. We have some information about JAK inhibitors in our new medicines booklet:

nras.org.uk/publications/me...

Regards

Beverley (NRAS Helpline)

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Thank you. I have spent some time online on reputable websites reading about this drug. I live in Scotland so it may be that it is already approved.

Regards

Chez

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Hi Chez,

yes, it is approved to be used in the UK already. In England and Wales the NHS follow the NICE guidelines and they are in the process of deciding when it should be used but the guidelines are out for baricitinib already so expect they will be the same. I know it has been mentioned on here already and I have spoken to someone who has been recommended it. In Scotland the SMC decide these things.

Cancer is nearly always on the list of possible side effects for so many drugs. Difficult to know whether it is because of the drug or if that person would have developed it anyway. But it is used in the States and if there were any real problems with cancer, I think it would be more widely known.

Beverley

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