SMC approve belimumab (Benlysta) for use by NHS Scotland

[Chanpreet_Walia]

The Scottish Medicines Consortium (SMC) recently completed their assessment of belimumab (Benlysta) as a treatment for active auto-antibody positive systemic lupus erythematosus (SLE). We are pleased to report that they have recommended the treatment as an option to be added to standard therapy for some patients aged five years and older with a high degree of disease activity.

What is belimumab (Benlysta)?

Belimumab, which is also known by the trade name Benlysta, is a type of drug called a biological therapy. It was the first newly developed treatment for lupus in over 50 years, created by GlaxoSmithKline (GSK).

In lupus, the immune system is dysfunctional and produces harmful antibodies that attack the body’s own tissues. Belimumab works by reducing the activity of a type of white blood cell, called B-cells, that produce these antibodies. This reduces the inflammation that causes the symptoms of lupus.

Like all medications, there are possible risks and side-effects associated with belimumab. Your doctor should discuss these with you before beginning any course of treatment.

Belimumab is taken in addition to other treatment for lupus and is either administered as an intravenous infusion, or sub-cutaneous injection (which can be self-administered).

Who can have belimumab (Benlysta)?

You will not be offered belimumab if:

- your lupus isn’t active.

- you haven’t tried other treatments appropriate for your condition first (standard therapy).

The new recommendation from SMC is for belimumab to be offered if:

- you are positive for at least one serological biomarker (positive anti-dsDNA or low complement)

- you have high disease activity despite standard therapy (defined as a SELENA-SLEDAI score of 10 or more)

Further Reading

The full Final Appraisal Document from SMC is available to read via scottishmedicines.org.uk/me.... This document provides full details of their recommendation, including the rationale for reaching their decision.

[purejoy]

HI Chanpreet,

I received a message in my email, saying because I used Benlysta you might want to hear from me. I only had one infusion. During my first infusion I began to itch. The nurse gave me some meds to stop the itching and I was able to resume with the infusion without any further symptoms. Unfortunately, within 3 days after my infusion, I began to have fevers, esophageal pain, some trouble breathing and anxiety. The fevers lasted about 4 or 5 days. all the side effects were gone within about 10 to 14 days. The good news is that the day after the infusion, I had no inflammation in my joints. The swelling in my fingers and the pain in my wrist are gone and have been gone since that first infusion on September 13, 2022.

I still take prednisone but before benlysta I hadn't been able to get below 20 mgs with out having daily joint pain. I'm now down to 5 mgs and so far I haven't had any set backs during the tapper. My doctor says that my experience is rare and she expected the benlysta to wear off within a couple of weeks to a month but I'm still doing well. I'm interested to see if I can get down to 1 mg.

I wish that I could take benlysta at least one more time. I'm so sad that I had to experience the side effects. I wonder why I had to get the side effects when some many of my doctors other patience don't. I hope and pray that one day, researchers can find away for people like me to take this miracle drug without getting the side effects.

If you want to know what other patients are saying about this drug, you might look at a site called "ask a patient" there aren't many patient reviews but the ones that are there might be helpful.

Have a nice day.

Diane