Belimumab (Benlysta) finally approved for limited use on the NHS

[Paul_Howard]

The first new treatment for lupus in more than 50 years, Belimumab (Benlysta), has finally been approved for limited use on the NHS for certain patients living with the condition in England and Wales.

The National Institute for Health and Care Excellence (NICE) said on Tuesday that the drug would be made available under a managed access scheme between GlaxoSmithKline (GSK) and the National Health Service (NHS) in England. 

This requires the treatment to be reviewed by NICE after three years, during which time further data will be collected on its benefits to patients.

Benlysta, the first new treatment for lupus in a half-century, was approved in Europe five years ago. It is the first in a new class of drugs called BLyS-specific inhibitors, which work by targeting a naturally occurring protein believed to play a role in the production of antibodies which attack and destroy the body’s own healthy tissues.

GSK will provide the medicine to the NHS at an undisclosed discount.

“We are very pleased that NICE has announced that this new treatment will be made available on the NHS for lupus patients in England and Wales who meet the necessary criteria. It has allowed access to another treatment option for those with advanced disease which has failed to respond to currently available therapies.” – Chris Maker (Director of LUPUS UK)

We will keep you updated with any further news developments on this story.

[ecough]

I'm from the US and I've been on Benlysta infusions for a year and highly recommend. I've had no major side effects except for a headache here and there after the infusion. I'm still on Plaquenil, though, and a very small does of prednisone. I've tried other medicines like methotrexate (awful) and Azathioprine which made me so sick I stopped after just a couple of weeks. Nothing has worked as well as Benlysta.

[Paul_Howard Partner LUPUS UK in reply to ecough]

Hi ecough , thank you for sharing your experiences on Benlysta. It's great to hear that it has helped you and you have had minimal side effects on it.

[Hidden in reply to ecough]

Hi there. I live in the US and if approved I will begin Benlysta. I'm glad to hear that Benlysta was working for you. I would like to know if you are still on the treatment and if it is still working. I am also taking Azathioprine and Plaquenil. Azathioprine is not working for me. I've been off Prednisone for about 3 months and my body is not happy. Praying Benlysta works for me.

CosmoLupie

[ecough in reply to Hidden]

Yes, I am still on it and it's still working well for me. Everything else is the same as far as medications go (Plaquenil and Prednisone).

[Djlr in reply to ecough]

Saline infusion along with the Benlysta infusion can help with headaches. If you are doing the subcutaneous Benlysta (newer) still drinking a lot of water the day before and the day of injection and all the day after can help the headaches.

For our infusion, of course we are supposed to drink a “ton the day before”, the day of and the day after to help open our veins and help move the medication through our bodies and “it can prevent headaches”. Also Benadryl or other allergy medication can possibly help with that type of a problem

[New47]

I would be MOST interested Paul I know Azathropine has nasty side effects I'm injecting MTX at the moment but I'm happy to try anything to improve my health. How do I go about getting Benlysta?

[Paul_Howard Partner LUPUS UK in reply to New47]

Hi New47 , you would need to discuss this with your consultant. If they feel that you have not responded to more standard treatments then they may be able to consider it as an option.

[New47]

Paul the real problem is my GPs inability to get me help. He keeps saying he can't refer me as his hands are tied by the local authority. On Monday he phoned as my Rheumy in Swindon was wondering what was going on. We live in West Sussex, my GP has totally misdiagnosed me. Due to his lack of knowledge of Ehlers-Danlos, which I can understand as I only realised 3 years ago myself why all the operations he suggested have gone so wrong. The fault was the Consultants who never asked. However on Monday for the first time he astonished me by saying I was positive to SLE in 2012! I knew nothing of this. I nearly died then as the Rheumatologist in Sussex had taken me off MTX as he clearly didn't know MTX knocks out your blood markers. However 3 days later I saw a locum Nuerologist who was so shocked he kindly did some tests including bloods. I wasn't told this until Monday and by December that year I was so ill and worse being hypermobile my teeth all fell back and one fell out. Now my GP is saying you need another Rheumy closer to home. I agree, I do, but I really could never trust the Rheumy who took me off MTX who is the Head of Connective tissue diseases in Sussex. I wrote and complained at the time but got the usual fob off letter. Now my CRP has shot up and I am getting so weak I just don't understand why my GP can't help me. I suggested a MRI no he can't send me for one. Then he said a pain clinic. I said why what will they do. If I walk in and say I have Ehlers-Danlos VIII and Lupus in my brain with possible Chiari or a hypermobile neck what is a pain clinic going to do!