erelzi to benepali…bio similar experiences

[Rooby-Dooby]

hi,

I’ve had RA for about 13 years. Well managed recently with Erelzi…prior to this I was on humira and had to switch to Imtaldi, biosimilar due to my hospital suggestions as it was cheaper.

mot wasn’t as effective and it took months to get back on an even keel and be well managed again!

now I’m being told I need to switch again to a biosimilar from erelzi to Benepali. I am understandably nervous about this.

I am 47 and work full time. I also take MTX injections (20mg) hydroxychloroquine and folic acid. Rarely need to take pain killers or anti-inflams.

Interested to know if Anyone has advice or experiences to share?

Thank you

Ruth

[KittyJ]

why do they want you to change ? If you’re controlled on erelzi I’m not sure why they’d suggest changing, you can say no of course and explain you’re happy on that but as you’ve not said why they want to change there’s not much else I can say 😊.

[Rooby-Dooby in reply to KittyJ]

silly me..,should’ve said…it’s because it’s cheaper!

I work for the NHS and so understand how and why it’s important to reduce costs, but I’m not happy to change to risk not being well managed when it’s happened to me before.

[Brikel in reply to Rooby-Dooby]

I’m on Benepali and have been for a number of years . For me it is very effective and I’m now reducing the Sulfasalazine

Hope this helps

[helenlw7]

I was successfully on Etanercept for 10+ years until the licence ended and I was switched to Benepali. It didn’t work at all so I was changed back to Etanercept. I never got back to my pre ahange level.

[Rooby-Dooby in reply to helenlw7]

I’m sorry you had this experience. It is exactly what I am concerned about.

[Runrig01]

I’m confused why, as Erelzi is also a biosimilar. There is very little cost difference with Erelzi costing the nhs £643.50 for 4 weeks supply, compared to £656 for Benepali. Unless your Trust have struck a special deal. Personally if I had had a bad experience, I would be refusing to switch, which you are well within your rights to do.

[Rooby-Dooby in reply to Runrig01]

thank you for the coatings and the advice. I agree with you and have thought it through…am going to try to stick with erelzi.

The letter I received states it’s because it’s cheaper!!! Maybe it’s a supply issue / deal??

[Paula-C]

I was told a few years ago I was told I was going to be switched from enbrel to a biosimilar drug. At first it was going to be Benepali then I was told it would be Erelzi, I refused to be switched, I typed up notes explains why and handed them to a specialist nurse to give to my consultant. You've got to be firm about refusing and give good reasons why you don't want to switch like I did. Like Maureen I knew of the costings of biosimilar drugs and Erelzi is cheaper, that's why my bio similar switch was changed when Erelzi had been approved to be used here.

[Seatgeorge]

Just started benapali, certainly helps with joint pain I'm very impressed, can't say about any side effects as I haven't noticed any as yet, one thingni have learned when putting in the leg make sure you put it in the side quite painless.

[FloozieDuck]

Benapali works for me,l also take hydroyxchloroquine my RA is very erosive.

[StuMck55]

Hi, since I been off Humira, have never been the same since, was put onto Inraldi, just didn't help at all now I am on Rixathon infusions bi yearly, time will tell, I did request recently to revert back to Humira, was told its not possible

Regards Stu

[Rooby-Dooby in reply to StuMck55]

same thing happened to me, was told I couldn’t go back on to humira after trying the biosimilar, which I why I ended up on erelzi. Don’t want a rerun so I’m going to try not to go onto the biosimilar of erelzi either.

Thanks for sharing, I hope your infusions help you to become well managed again

[Paula-C in reply to Rooby-Dooby]

I've heard that at my hospital all the patients that were switched from humira to a biosimilar drug have been put back on humira.

[KittyJ in reply to Rooby-Dooby]

Rooby-Dooby Erelzi is a biosimilar already 😊

[Rooby-Dooby in reply to KittyJ]

yes! I hadn’t realised!

[Nyreedw in reply to StuMck55]

So your hospital broke NICE guidelines about changing to Biosimilars. You had to agree and should have been offered to return. I refused to change giving a researched fact filled case, including costs and ingredients etc and was left on Humira. Plus by having to have infusions they have actually cost the nhs more than leaving you on Humira. Biosimilars are £70 per month cheaper. Humira is £704 per 2 injections Imraldi is £633, not much of a saving especially when it goes wrong xx

[Rooby-Dooby in reply to Nyreedw]

I was told that returning to Humira was likely to be ineffective once changed off of it.

I understand what you are saying about the costs saving being small, but I guess if 100 patients successfully swap that’s a cost of £700 a month and £8,400 a year…small savings in big numbers adds up and the NHS is strapped and looking at cost savings, I get that as I work for the NHS myself…I think that’s why I have such a dilemma about this!

[Nyreedw in reply to Rooby-Dooby]

Everyone who changed at our hospital all failed changing so that cost more. NRAS starting research on this which set alarm bells ringing for me. Our hospital was one of the last to implement biosimilar changing due to this.

[Rooby-Dooby]

I’ve contacted my rheumatologist and he has agreed that I can stay on erelzi! 😁

[Nyreedw]

Do you mean Enbrel to Benpali as Erelzi is a biosimilar where as original is Enbrel. I was asked to swap from Humira to biosimilar and refused. Under NICE guidelines you have to agree. I used lots of research to explain my decision. The cost is literally £70 difference a month and not worth ruining how stable I was. Research has shown people who change do not do as well anymore and try going back to original doesn't always work again. They are not the same hence the name Biosimilar not generic. They also have a lot of different additives. I.raldi for example has Sorbitol in which is known to cause joint pain and stomach problems.

[Rooby-Dooby in reply to Nyreedw]

thanks k you for your reply…I mean did mean erelzi as that’s what I am in now…when I was stitched from imraldi to another biologic I went straight to the biosimilar…and I have been fine.

I have now had a reply form my rheumatology consultant and he has said I can stay on erelzi and don’t have to switch to Benepali, which I am pleased about

[Nyreedw in reply to Rooby-Dooby]

Fantastic news. Just shows you should have stayed on Humira as it probably cost them money in Imraldi failing. People having to change and failing has cost nhs money so defeats the object of saving. Hope it stays the same.

[Rooby-Dooby in reply to Nyreedw]

thank you

Agreed