Anyone taking Benlysta in the UK?

I'm wondering why so many women are taking the anti-malaria medications instead of the Benlysta for their Lupus. Does the UK not allow you to take it? I'm going to attach a link regarding Zoladex(used in treating Endo). The side effects interact with the anti-malarial drugs, narcotic pain meds and steriods that many of you seem to be taking so it concerns me that you may not be informed. I was diagnosed with Endo roughly 4 years ago, have gone thru 5 laproscopic surgeries and I refused to take the Lupron that my gyno prescribed because it's too dangerous!! I am going to Rheumatoid dr. today to find out for sure if I do have Lupus. I meet 6 out of 11 US criteria and have been having symptoms( including breast swelling and pain) since I was in my late teens. I finally got a new doctor to listen to me about possible Lupus in January of this year after running high fevers, joints exploding, headaches, serious fatigue, numbness in both legs lasting for days, numbness in right arm, chest pain, back pain, etc. etc. etc. I just hope I can get an answer to all these problems!! My marriage has suffered greatly for so many years...until the doctor agreed with me to look into Lupus. Now things seem to be getting better between us and he actually offers some support so I don't feel so damn alone with this. He suggested I find a group outside of the US to see what other treatment options might be. I came across this group and decided to join after seeing the posts saying that many of you were still on the anti-malarial drugs. Benlysta was specifically designed for Lupus and was finally approved in August 2013. Many patients in the US are having "remission" type experiences after being off the anti-malarial drugs. Here is the link on Zolandex:

17 Replies

  • Can't wait to see other replies. Never been offered anything apart from anti malarial and methotrexate which hate taking due to side effects

    And welcome to this site!

  • Thank you for the welcome!

  • Hi. I'm on anti-malarial drugs and have been since I was diagnosed around aged 11yrs.I've been unlucky with treatments so far to try get some control over the flares ect. Benlysta is still quite new in the UK and from what I've gathered it's for patients who have tried and tested others that haven't worked/controlled flares ect. When I was given it sometime last year I was only the 9th person in the UK at the time to have been given it. Unfortunately for me it still didn't work as well as my consulant hoped. That's even while I was still taking my anti malaria medications. Hope that helped somewhat.

  • I'm sorry to hear that it didn't work very well for you. Some of the articles I've read have said it may take up to 2-3 months to start feeling the effects. How long were you on it? I don't know too much about the combinations (Benlysta + anti-malaria), as I'm new to this whole thing. Thanks for the reply and take care.

  • Ok , I'm confused why are you talking about zolidex, prostap and lupron for Lupus ?

    And what is Benlysta?

  • I was responding to another post re: a woman with Endometriosis and Lupus. Apparently it is quite common to have both afflictions. She also said that she was severely ill from the combination of Endo and her Lupus meds. I was asking her if Benlysta was available in the UK because from what I linked in my post was a strong warning of drug interactions of the Zolidex, prostap and lupron.

  • Our UK NHS info about Benlysta:

  • Thanks. Looks like another serious drug. Seems quite a few reasons why it can't be given

  • Your welcome.

  • Thank you for the link. I'm going to look it over when I collapse for the night:)

  • thank you for the info

  • Every person who can tolerate antimalarials is given them regardless what other meds they are on as it is a lupus staple, it reduces frequency of flares, rashes and fatigue.. most people with lupus in uk stay on it for life. I know many in US who were on the Benelysta trials. A few had benefits but there were many disaster storys. It is in its very early days as a drug and tends to get used only where all else has failed. I wasnt actually aware it had been approved for use in the uk yet.

  • Thank you for the reply. I stated in another post that I'm not sure of the drug combinations but was under the impression that the Benlysta was to replace the anti-malaria and chemotherapy pills. Benlysta is being marketed over here as being designed just for Lupus, as a new/better/replaced way to treat it. I'm definitely going have to do a lot more research on this, as I'm not willing to take the chemotherapy pills and anti-malaria meds. My father passed from Cancer and one of the side effects of the chemo pill is actually getting Lymphoma.

  • My Hubby & I watched in hopeful anticipation as Benlysta went through its trails & was finally approved in America. But when we read the synopsis we were bitterly disappointed to find it was only suitable for a select few types of lupus patients & even then the results were pretty disappointing overall. So, we were not surprised that NICE failed to approve it in the UK.

    I hold on to the hope that if research like this is being done, it may eventually lead to the development of a more effective treatment. Each step may be a small one, but it may prove to be a momentous one for those of us with lupus.

  • Thanks for the reply, I was not aware that it was only for certain types of Lupus. I guess I have more research to do.

  • I will try & find the info for you. I seem to remember those with kidney involvement being one of the target groups.

  • My wife was part of the study and is still on Benlysta (we are in the US). Her SLE attacks her kidneys and she was put in as a last resort. The benlysta is a god send and she is doing great with it. She said that it takes a few sessions for people to start feeling its effects. Her nurses at the transfusion center always ask her to take to new patients who are taking it to level set their expectations. She explains it takes time but that for her, the benefits have been great.

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