LUPUS New Drug

[tulip47]

First New Lupus Drug in 50 Years: Benlysta Gains FDA Approval

Just found out about this tonight, anyone else reading about it.........ao exciting !!!

[mstr]

Great news for all those who need it. Has it been approved for the UK though.

[Hidden]

I'm afraid we won't be getting it here. Seems wrong, but there it is

google.co.uk/url?sa=t&rct=j...

[Melinda]

From what i've read about it, it's not suitable for everyone with lupus anyway.

[LloydE]

The problem is in America they will approve ANYTHING, even if they know it kills you. If you have ever watched an American commercial for drugs, they list side effects worse then the condition the drug is treating!!! if it gets approved here, thats a different story.

[katel]

Im taking it by infusion every 4 weeks at the freeman hospital in Newcastle, i was on the uk trial of the drug for 2 years and because it worked for me my fantastic consultant applied to have it funded for me at 16k a year.. although NICE havent approved it!

its like any lupus treatment... some work for some people others for other people, im still on a cocktail of pred, methotrexate, hydroxychloriquine and pain killers, but the results have been life changing for me.. ok everyday is still a struggle and not entirely pain free BUT im not stuck in bed everyday or have to use a chair 24/7... ive even had a few nights out so for me it is worth being a guinea pig

[mstr in reply to katel]

That's fantastic and good to hear how it is helping. It's great that your consultant has advocated so well for you too. Good to hear this

[Dawnie06]

Wow Katel that is brilliant really hope u get funded like you say may not be for everyone but if it helps some. I've only been able to walk round house since jan keep losing use of legs hate having to use wheelchair

Good luck x

[loopy-lou]

Really hope you get the funding Katel. I am another who has mobility issues. Good luck x

[katel]

thanks everyone!, ive been funded for as long as i need it.. im lucky to have a fantastic consultant Bridget Griffiths and Karen Walker who is the specialist nurse... i couldnt ask for better people to fight my corner... letters for esa and DLA, no problem.....

[pfoz88]

Great news Katel, ive just spent the thick end of a week in the Freeman being treated by prof Sheeran and his team after a biopsy showed my kidneys to be severely inflamed. Currently on prednisolone and mycophenalate and pay for prescriptions as im fortunate and can still work, though been on sick this week, but a little worried i may miss out on such medication as yourself as i could never afford to pay for it myself at that price. Hopefully the meds im on will do the trick but my condition has accelerated very quuickly this year.