Have you been switched to a biosimilar of Humira? If so, we'd really appreciate your views.

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.]

[Paula-C]

I'm on enbrel and I've been told that at the moment thankfully I can stay on enbrel, but I know that my hospital is switching all patients over to a biosimilar drug, I seem to have escaped the switch for the time being. Have you done a survey of people switching from enbrel onto a similar drug? If you have can you point me in the right direction for results, if you haven't could you do one.

[Scootergirl1 in reply to Paula-C]

Hi, my son was switched from Enbrel to Benapali some while ago. Unfortunately after a month he started to notice his fatigue had returned then his joints again became swollen and painful. Benapali clearly was not the same as Enbrel and was not working for him. I was so angry as it took a couple of years to get him put on Enbrel and it was keeping him well.

It then took ages to get him out back on Enbrel as his case had to go before the "Benapali Committee" whoever they are. I thought it would be the decision of his Consultant. They did not all respond at once and we had to wait for one person who took much longer than the others to reply. Fortunately they agreed he could go back on Enbrel but the whole process took months to sort out and was very stressful. I don't know how much money is saved by swapping people to Benepali but in my opinion it is not worth all the stress it caused. If something is working for someone why change it?

Hope you can stay on Enbrel.

[Nessa28 in reply to Scootergirl1]

I am waiting to see if I can go back to Humeria and wether I will fit the criteria . I so hope so . I want my life back now🤞

[Paula-C in reply to Scootergirl1]

It took five years before I finally got on the right drug combination for me, Enbrel and mtx. I went straight into remission and have been there for six years now, no pain relief required.

I was told November 2017 I was going to switch to Benepali, this was later changed to Erelzi, it was a little cheaper than Benepali. I did lots of research and found the costings of these drugs to the NHS (link below). I typed up my thoughts and objections to switching and gave them to my specialist nurse. They obviously worked because I was told last November by my consultant that I could stay on enbrel. A few weeks ago my hospital sent out letters to patients telling them they had to switch, I haven't received one yet, but I still worry I may have to eventually.

I found out that Benepali is just over £14 per injection cheaper and Erelzi is just over £17, I don't think that the small saving is worth jeopardising my health and well being. I would imagine that the manufactures of enbrel will have to reduce the cost of enbrel to compete with the cheaper drugs, after all they've invested millions of pounds in the drug.

bnfc.nice.org.uk/medicinal-...

[VeronicaF]

I due to go on Etanercept but I don't know what form that's going to be yet

[Nessa28]

I changed to Imraldi it's been awful and I can honestly say Humeria gave me 2 years of movement ,independence and a ability to reduce my meds . 5 weeks of Imraldi and I've lost most of this and gained stiffness ,pain , tiredness and tears. At least now I'm not on it after so many problems I can say the headache is slightly better today 😪

[AuroraB]

Got a letter saying I would be switched, not looking for agreement or input from me, and I wrote back saying I didn't want to be switched and have not heard anything more for the past couple of months. Humira still being delivered.

[hawker955]

I switched from Humira to Amgevita about 6-9 months ago and the latter seems to be working just as well as the Humira did. No problems at all, so far! I am still paranoid about infections, respiratory in particular but generally as well.

I suffered a viral vestibular neuritis 4 months ago so the immuno-suppression might have contributed to that I suppose? I still recovered in the "usual" 3-4 weeks predicted by the doctors. It is not a serious condition but very unpleasant feeling severely travel-sick whilst sitting still at home watching TV until I then started vomiting for England!! i.e. profusely! Fortunately my wife arrived with the bucket in the nick of time!!

The worst effect was messing up my training programme for my cycling-competitions in 2020! I had eight days in hospital whilst they monitored my progress plus was scanned for a stroke and to monitor the shunt implanted inside my head. All of those were clear which is good!