Has anyone applied to their PCT for the Belimumab/Benlysta treatment? If so, what was the result?

[alyosha]

I know that NICE has refused to recommend Belimumab for treatment for lupus patients (4 days ago!) but this does not necessarily mean that a PCT can't sanction it, if they're presented with good reasons, evidence and consultants' recommendation. But the NICE refusal and the general drive to cut costs will probably be against success, I should think. It would be good to hear from people who have experience of this process.

[flutterby]

Hi, my consultant has applied for benlysta for me, I don't really know the process involved, I trust him to do what's best, but I am not holding my breath! I have already been through waiting for approval for a drug from the PCT several years ago with rituximab, where they kept saying no until it was costing them more to pay for the IVIG that I was having, which was on label treatment! I believe that now it is much easier to get approval for rituximab, so maybe benlysta will eventually go the same way.

[alyosha in reply to flutterby]

Hi, thanks and that's my experience too with the rituximab, about 4 years ago. The PCT gave in but unfortunately the drug did not help much and I started MTX subcutaneously (weekly injection). That improved things but not hugely, hence the possible application for benlysta.

You're right about the rituximab process; I believe it is now one of the first ports of call, rather than leave it till everything else has been tried. I've got a hospital appointment tomorrow at which things might become clearer though the most likely outcome is to continue with present medication.

[Purpletop in reply to alyosha]

Apologies for the ignorance but what is the benefit of rituximab or benlysta against the mtx, az, etc? Is it that nothing else works? I'm not on any of those but I would like to know, for the future. Many thanks.