Name of the drug that as been refused funding byNICE ! this year again that can help with polymyaglia and giant cell?

[Jamie345]

i have someone who wants to help me but I need the name of this drug?

[PMRpro Ambassador]

Tocilizumab - but you are incorrect in saying it has been refused funding by NICE. The decision was changed after appeal. It is available under certain criteria.

[Jamie345 in reply to PMRpro]

Don't suppose you know what criteria? Thank you for replying so quickly I don't know why I thought it was refused funding! Bit embarrassing! Regards

[PMRpro Ambassador in reply to Jamie345]

Offhand no, not in detail anyway. Kate Gilbert will know.

I think it has to be refractory proven GCA that isn't responding to steroids or patients who have relapsed. There is also something about not being used for more than 1 year I think.

[SnazzyD in reply to PMRpro]

Yes, that’s what I remember it saying too but wasn’t there something saying use at start if there are reasons for not using Pred?

[PMRpro Ambassador in reply to SnazzyD]

Possibly - but Jamie has been on pred for 8 months or so I think so that is immaterial.

[DorsetLady PMRGCAuk volunteer in reply to Jamie345]

Hi,

I think its only for GCA patients at the moment, so don't get too excited.

Hopefully Kate will see this post, but you can always PM her.

[HeronNS in reply to DorsetLady]

According to her first posts Jamie had definitely presented with GCA-like symptoms, jaw pain and so forth and was given at least 40 mg pred so would that be sufficient criteria to suggest Actemra (tocilizumab)?

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

One would certainly hope so!

[Telian in reply to Jamie345]

According to Professor Dasgupta it's for patients who've suffered refractory flares and haven't responded to steroids at the start of their illness. As PMRpro says the original decision was overturned and has now been approved by NICE but under that criteria. Stats showed 56% of patients showed sustained remission who were taking either Tocilizumab (T) & steroids or just T. Not a high enough % for me I'm afraid. I'm sure you'll get clarification elsewhere too.

[Jamie345 in reply to PMRpro]

Is ESR of 35 showing inflammation come down quick from 67 then seams to stopped?

[PMRpro Ambassador in reply to Jamie345]

The ESR will only continue to fall as long as the dose of pred is high enough. An ESR of 35 is regarded as showing inflammation - but all sorts of things can contribute, not just PMR/GCA. It is very non-specific.

It is perfectly possible that your starting dose of 40mg was too low to be really effective - and then it was reduced too far and too fast. There is study evidence that GCA can still be active even after 6 months at high doses - i.e. above 20mg/day. The pred doesn't work on the actual disease process, just mops up the inflammation, and 40mg is the bottom end of the GCA dose range. There is also evidence that patients are able to taper more easily after starting with an exceptionally high dose - 3 x 1g intravenously, called pulse therapy. So starting with a low dose, presumably thinking to save the patient exposure to steroids, may achieve exactly the opposite.

[Dream21]

I take a shot of Actemra once a week and 2mg Rayos (Prednisone). I have GCA and PMR. I could not get below 25mg with my ESR started to rise dramatically. It has been a life saver for me. No side effects and little pain, although lots of stiffness. It did nothing for energy, which is extremely low.