NRAS has been working with NHS England, alongside other patient organisations to design resources for patients and health care professional's on the topic of the Adalimumab biosimilars being introduced into clinical practice.
We would like to capture your views on how, if you’ve been switched to a biosimilar of Humira, that process has worked and been handled.
Please help us by completing this 10-15 minute survey: bit.ly/2I1WfbX
[If you have been asked to switch from Humira but have not yet done so please come back to complete this survey after you’ve made that transition.]
Did you do a survey regarding people switching from enbrel to a biosimilar? Would love to know how people who switched have found the biosimilar drugs.
Hi Paula-C I was on enbrel but was taken off due to injection site reactions. I would get a red bullseye where I had injected, then it would go bright red, itch like hell, and spread over my complete upper thigh!! I was switched to Simponi which, (touch wood) as not given me any side effects, I do get a slight itch at injection site, but if I dont scratch it, it is gone next Morning. Also on the plus side, you only have to inject Simponi once a month, as embrel was once a week. It gets delivered to my house once a month, and is kept in the fridge. I'm not pain free by any means, but I am able to hold a 33 hour a week job in a wholesale warehouse, which helps me feel normal most of the time!
Thanks for replying. I am on enbrel at the moment, been on it since 2012, it took me straight into remission. I was told I was going to switch but I objected and at the moment I can stay on it. I feel I've won the battle, but not the war, I think I may have to switch in the future.
I've read lots of reports from people who have switched and have had side effects from the biosimilar drugs and some have after awhile started to flare, some have been put back on enbrel. I just wondered if Nras had or could do a survey to see how people are doing after switching, say after six months.
Glad you can stay on Embrel, it's such a relieve if you can stay on the drug that makes you feel better, just a shame that they can switch meds, and withdraw with very short notice, lots of rules & regulations which makes it hard for everyone, hope you get to stay on it for the see able future!
No we haven't done a survey on the enbrel switch. The reason we and other charities are doing the survey on the adalilumab switch is because there are so many biosimilars for this medication and the roll out of is much larger than the etancercept one. NRAS along with other charities have been working with NHS England regarding the Humira biosimilars which prompted this survey.
Thank you for replying. I've replied to Lisamac 7414 the reasons why I asked about enbrel. It might be interesting and informative to do a survey to find out how people already established and doing well on enbrel have found the switch to a biosimilar drug after several months.
Completely agree but it may be some time before we have the time and resource to do so. We are very limited here at NRAS with capacity of staff but with even more biosimilars coming to market in due course we may consider conducting an full review of all biosimilars introduced in due course.
My switch from Enbrel to Benepali has led to a change in my joints. Everything was completely under control with Enbrel, although I hated the injections, but since the switch I've been getting back to exactly how I started but with more deformed joints. Rheumatologist said that I must be the only person on the planet to think that, but I know my own body and I read this site so I know that I'm not. As my blood tests are fine he won't listen to any of my points about returning to Enbrel. So I continue to deteriorate which he just doesn't get.
Really sorry to read this. It's your body and it's you that's in pain, yet your consultant won't listen to you. I would imagine that they are under pressure from higher up to try to save money but a patients need must come first, it's you living with the consequences.
I've just answered a thread imraldi v humira and in it I've asked Nras to help us, someone needs to stand up for us.
My son was switched from Enbrel to Benapali even though on Enbrel everything was under control. Once on Benepali his fatigue returned and then his joints started to flare. He managed to get back onto Enbrel as Benepali clearly did not work for him and is not the same as Enbrel, which is what they told us. It took some time to get Enbrel prescribed again as his case had to go before a committee. I thought it would have been his consultants decision but he had to wait for a decision from the Benepali committee. Who the members were, what knowledge they have or if they have access to his medical records I have no idea. All extra stress while he waited and deteriorated further.
I worry that I will eventually have to switch to a biosimilar drug. I've done my research and Benepali is just over£14 per injection cheaper than enbrel and Erelzi is just over £17 cheaper. I'm hoping that the manufacturers of enbrel will bring the price down to compete with the biosimilars now available. It's not right that a patients health and well-being is being decided on by people who don't know us and probably have no idea how awful RA can be. Let's face it, to of qualified for anti tnfs in the first place it would of had to of been really bad. I wish your son well and hope that he improves once back in enbrel. x
I was given a genetic of humira which had the ingredients for the first humira that came out which caused a stinging effect like 10 bee stings at the same time. I had a reaction to this and I am now back on the improved humira thank goodness. It all comes down to cost again.
Please could I ask you to complete the survey bit.ly/2I1WfbX to give this feedback if you haven't already. I am pleased to learn you were able to switch back to the originator product as we're hearing that is not been given as an option in some units.
The survey should only take about 10 minutes.
Also just to clarify the biosimilars are not generic medications as they are developed from living cells i.e. not synthetic compounds. To find out more about what a biosimilar is take a look at nras.org.uk/biosimilars
I just started Humira on 1 Apr. 19, been a bit of a struggle, one very serious bout of pneumonia already which led to skipping a dose, so I'm just looking forward to a steady course for a bit.
I was switched to biosimilar Imraldi (informed by letter, not asked) from Humira 2 months ago. I had been on Humira for approx.11 years. Humira turned my life around, no problems. I have now been told my blood sugars are very high, I have terrible night sweats and leg cramps in the night and can feel the pain of RA in various joints returning.
Sorry for delay in replying. I will be providing this sort of feedback to NHSEngland as part of the survey results ( all anonymous of course) if you haven't already completed the survey plase may I ask you to do so before next week. here is the survey link bit.ly/2I1WfbX
It’s a pity NHS England are not interested in finding out how all biosimilars work or actually don’t.
I was on enbrel for 15 years plus. It transformed my life! Then had to wait for too long to have total knee replacements so the inflammation levels were sky high and enbrel couldn’t work as it had done. So have been put on Truxima infusion which frankly isn’t working! Am in so much pain, can hardly walk. I have also noticed other people who are on this biologic don’t get full relief either. So it’s quite clear this although cheaper simply doesn’t really give relief and a better quality of life to people. Yet, “those “ who make decisions have no regards and NO idea of the misery these substandard bioliogics cause to most of us.
Is there anything you could do in order to make NHS England review the situation and being made aware of the on-going misery we patients suffer because of their lack of listening to us and lack of feeling the pain we have to endure day in day out?
Thanks Paula. What should we do as a group of patients suffering so much because of ineffective cheaper biosimilars? I welcome something cheaper as long as it works but sadly not the case. I am fed up and feel so frustrated to hear rheumatologists/commissioning bodies telling us “they are working “ when in fact they haven’t got any idea of the pain and disability we are going through because they don’t feel it! They might “imagine “ it which is not the same, far from it. They need to listen to patients who have to live with such misery. Am convinced they wouldn’t use biosimilars if they suffered themselves. It makes one feel so vulnerable and it’s so depressing.
I've read loads of accounts from people who have switched to a biosimilar drug and it's not worked the same as the original. I've read two people saying that their consultant told them that there finding that people switching aren't doing as well as before.
I've been told that I can stay on enbrel, but I still worried that eventually I may have to switch. Just hoping that the manufacturers of enbrel bring the price down to compete with the bio drugs or over time the powers that be realise that switching patients already established on the original and doing well isn't a good idea I will be able to continue on Enbrel.
Yes, they don’t work well. A waste of time and money and so hard to live without the relief to enjoy a better quality of life. Do hope you can carry on with enbrel.
My rheumatologist keeps saying the biosimolars work well and are the same! This isn’t true.... similar but NOT the same. Not sure how I will cope.
They're not the same, a specialist nurse tried to tell me that during a telephone conversation, I had to butt in and tell they aren't, adding the clues in the name...bio *similar*.
Yes of course it’s easy enough to understand BUT they don’t want to know, to admit to that fact because they would have to stop using them! There must be a reason why they are cheaper?? They probably get some financial help/bonus from big pharmaceutical companies for using their drugs hence an incentive for using them. I wouldn’t be surprised.
They must think we are not intelligent enough to realise and they know we’re in a most vulnerable situation to argue. It’s immoral and unethical.
We need to find a way to ensure they listen to us, the users of such second quality drugs. To be heard and respected. But how?
Had Humeria, didn't suit me, had lost a lot of weight with that, and wasn't feeling well, but when mentioned it to my Rhumotologist, I was told to stop it.
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