Tocilizumab

[Tonylynn]

Does anyone have any experience of having been given this drug (by intravenous infusion once a month)? Used as steroid sparing agent.

also ... does anyone have any blood tests results for Plasma IL-6. (Cost seems to be same as CRP but more sensitive to extent to which Prednisalone is working).

[PMRpro Ambassador]

Plasma IL-6 levels are not done in all hospitals, CRP is. I have had IL-6 done once - I was never told the result. But it is raised in other things besides PMR - which the rheumy I saw decided I did not have despite a dramatic 6 hour response to 15mg pred. Luckily others thought it was.

A Phase 3 clinical study using tcz in GCA was completed early last year and reported in November. It has been granted breakthrough drug status by the FDA and is currently being submitted for approval for use in GCA. An NHS consultation last summer rejected its use in GCA but approved it for Takayashu's arteritis, essentially the same disease apart from the age criterion. I believe this is under review as a result of the trial findings.

There are a few patients in the USA and Australia who are on it - most of the ones I know had their diagnosis reclassified as RA for which tcz is already approved and in use in order to have the costs covered.

I believe Prof Dasgupta does offer it to the odd patients - but I don't know on what grounds. I suppose special funding is still available for individual cases in the NHS. It is, after all, rather more expensive than pred.

[Tonylynn in reply to PMRpro]

Seeing him soon. Will ask him.

It seems to me that il-6 levels are more important than crp in determining the effectiveness in GCA.

[PMRpro Ambassador in reply to Tonylynn]

According to one study, there are a lot more about using CRP - it takes a lot to change the habits of a lifetime within the medical community! Particular when it would mean introducing widespread access to a test that isn't particularly widely used outside specialist rheumatology - in an already cash-strapped NHS. Whatever test you use - I imagine symptoms will always trump bloods!