NRAS, Oxford Academic Health Science Network and Sandoz Global are pleased to launch "Biosimilars, making the switch" - a new animated information video on what to expect when moving from a biologic to a biosimilar.
Check it out here: youtu.be/kNZdNI5rBzE
Hi Katie,
It sounds fine in theory, & of course Sandoz Global would promote Biosimilars.
But taking a chance on the horrible side effects some people have suffered is still a leap in the dark isn't it?
Those having 6 monthly Biologic infusions, me included, will have to think very hard if a change is suggested.
I would have no hesitation in starting off on the Biosimilar, but I do have many doubts about switching after taking the original very successfully for two years....how to decide to take a chance , with no guarantees, on losing the pain free life I have now after years of acute discomfort, is not an easy decision.
I know the NHS is cash strapped, but I don't think successful treatment should be withdrawn from individuals on cost grounds...I'm sure the amounts involved would be a drop in the ocean anyway!
Totally agree A C. If things are fine don't interfere. Many people have had to go through 3, 4, or 5 biologics to find one that suits. Why not leave well alone? Too many stories of people ending up at square one.
Different if you start on a biosimilar. Totally unethical to try and force people to change for no medical reason.
I have been on Enbrel successfully for about ten years and today I’m changing to Benepali. I’m very wary of the change, but have no choice. I’m told by my rheumatologist I have to change but can go back to Enbrel if my condition worsens.
Hi helenw7
I wasn't on Enbrel as long as you but I too was switched and have now been on Benepali for well over a year and have even better Inflammatory markers.
Best of luck to you , just thought I would try and give you a bit of reassurance as totally understandable you would be wary.
Mx
Hi Helen, annoyed for you that they are saying this. I don't buy that .. that you have no choice .. it's awful of them to say that and that is what infuriates me. It is the rheumatologist who authorises which med you will take in our hospital anyway. You do have a choice. They just don't want you to think that you have a choice. They've tried it with me but as I have had terrible joint deterioration so quickly when a medication fails, I plummet so very fast and I can't risk it again, I have a co-morbidity .. Graves disease/over active thyroid which worsens when my RA is out of control and I was close to organ failure with the Graves on diagnosis a few years ago so Rheumatology are very keen to keep me stable and have supported me on staying on my original med and not switching to a biosimilar. My nurses support me too. I had awful pressure and bully tactics from the main hospital pharmacy but told them twice and firmly, NO. Told them why but it fell on stoney ground. I understand what the NHS is trying to do but if it was a scenario as AC said above where you haven't been on the original, product then you would consider a biosimilar as you don't know any different as you haven't had the original, product working great for you (as mine has for the last four and a half years and turned my life around) so I don't want to go back to that fast plummet again. Been there three times between failed meds in recent years, and going on long term steroids, depression beyond anything I have ever known and taking anti inflams/painkillers/transdermal patches and oral morphine, so I can't and won't risk my life for that or my husband's wellbeing as the impact on him was horrendous. I will resist all the way until there is proof and evidence just as with the biosimilars that they work well. Then I would consider but not at such an early stage of public use. I am not against medication progress .. anything but this isn't right for me at the moment. Hope you will be stable and do well on Benpali. xx
I can see that from your point of view it would be very wrong to be taken off meds that work for you. I’m going to give it ago and see how I do. I’m prepared to do battle to get back onto Enbrel if it isn’t as good.
I don't think you'll have to do battle to get back on it .. but I hope Benpali is more effective for you, Helen.
I’ve kepr the letter from the hospital telling me of the change and it says I can go back to Enbrel if the results aren’t good.
Thank you so much for that. I have read so many negative reports from people who’ve changed over. Even with Enbrel, mtx, amitriptyline, dihydrocodeine and ibruprofen before I go to bed, I still have pain in all my affected joints and I’d hate to get any worse! I can cope with this level.
I am hoping that the switch works well for you if Enbrel isn't doing that much, so lots of luck to you. x
I’ve read from some people who have started on Benepali that they are pain free - that I would love!
I DO hope so for you. My experience with Enbrel was short lived . . five weeks and then it nosedived. It worked after the first one though and within three hours I was returned to pain free mobility. Shame I developed antibodies to it! Hoping Benepali is the one for you. Rituximab is for me.
If the Benepali is as good as the Enbrel was I’ll be pleased, if it could make me pain free, even better! I’m glad Rituximab works for you.
Think comparing recreating simple drugs to anti tnfs......simple drug being like recreating a bicycle and anti tnfs being like recreating a complex fighter jet says it all to me. I’m afraid the video hasn’t helped me one bit. I’ve been told my hospital is switching me from Enbrel to Erelzi in a few months. I’m not happy and going to try my hardest to stay in Enbrel.
I hope you can Paula, and make a good case for it. xx
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