Biosimilar - Yuflyma: Hello all, I’ve just received a... - NRAS

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Biosimilar - Yuflyma

Domhem profile image
31 Replies

Hello all, I’ve just received a litter from East Kent that they are changing my biologic from Adalimumab to Yuflyma, after finally feeling a lot better I’m a little nervous that they are changing my meds. I understand it’s a bio similar so it’s should essentially be the same but I’m still not overly happy about it. Has anyone had any experience of this happening before or are even on Yuflyma? Any insights would be greatly appreciated, thank you.

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Domhem
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31 Replies
Stayloose profile image
Stayloose

No experience but I listened to a discussion on RA from USA. They pointed out that they are bio similar ie not bio identical. I am sure people with experience of changing will respond. I hope all goes really well for you.

Domhem profile image
Domhem in reply to Stayloose

Thank you, yes this is my concern that I react differently (not as well), I shall have to see I guess, thank you

AgedCrone profile image
AgedCrone

Unless the rules have changed.,.You are supposed to be consulted by your consultant or Rheumy, or at least have a word with your Rheumy nurse to make sure that you will agree to the change call your nurse & see what she says,

Domhem profile image
Domhem in reply to AgedCrone

I didn’t know that, thank you, I’ll give them a call on Monday, much appreciated

AgedCrone profile image
AgedCrone

My hospital changed the rules in the letter they sent & included the name & number of the rheumatologist pharmacist….so I called her & after a short conversation she agreed I could stay on my original meds..I am still on them,& have heard no more about changing…have a look at the NICE up to date info on changing,

Lematt profile image
Lematt

I was on Etanacept for about 17 years until I was asked by my rheumatology nurse if I would go on a biosimilar as they were a lot cheaper. I agreed, but unfortunately they didn’t suit me and I was put back on to Etanacept. Hope you get some answers.

Domhem profile image
Domhem in reply to Lematt

Okay that’s interesting that they’ll put you back on the original version

Scootergirl1 profile image
Scootergirl1 in reply to Lematt

The same happened to my son. He was switched from Etanercrpt to the biosimilar Benepali. It did not suit him still but it took about 3 months to get back onto Etanercept. It was not a simple process.

Piggyinthecraftroom profile image
Piggyinthecraftroom in reply to Scootergirl1

Enbrel is Etanercept and more expensive than Benepali which is also Etanercept but is a biosinilar.

Hope that clears up some confusion.

I was changed from enbrel to Benepali and have had no problem with it, but know others who have not had such a positive outcome.

HallySim profile image
HallySim

I received a letter too, no consultation. Am hoping I won't notice a difference

Nyreedw profile image
Nyreedw in reply to HallySim

You can challenge under NICE guidelines as you have to agree. It is supposed to be a joint decision. What are you on at the moment?

HallySim profile image
HallySim in reply to Nyreedw

Amgevita. It hadnt occurred to me to challenge, but it isnt great

Paula-C profile image
Paula-C

I was told several years ago that I was going to be stitched from enbrel to a bio similar drug, I wasn't happy, enbrel took me straight onto remission. Did my research on cost etc, other people's experiences and typed up notes as to why I was refusing to be switched and handed them to my specialist nurse to give to my consultant, happy to say I'm still on enbrel. I was told at the time by versus arthritis and the pharmacist at my delivery company I could refuse to switch. It's your health your wellbeing that's at risk here, if your not happy just dig your heels in and refuse. We should have some say on what we inject into our bodies, we have to live with the consequences not them.

Domhem profile image
Domhem in reply to Paula-C

Thank you for this, I’m going to do some research and see what I can find

Evie3 profile image
Evie3

Hi yes it happened to me when I was on Enbrel injections. Can’t remember what the name of biosimilar was. I have had so many meds over the years that haven’t worked or gave me awful side effects that I insisted I stay on Enbrel, which eventually they agreed. They aren’t exactly the same hence the wording and they cost less. Mayb u need to ask if the Biosimilar doesn’t work well can I swap back. Good luck

Domhem profile image
Domhem in reply to Evie3

Yes thank you for this, I’m going to do some research and see what I can find out

Nyreedw profile image
Nyreedw

Which version of adalimumab are you on at the moment? Yuflyma is the latest of the adalimumab biosimilars. They all have the same base ingredient but are all molecularly different from each other hence biosimilars not generic. The difference cost wise is around £10 per month. They are priced £633 -£646 where as original Humira is £704. Under NICE guidelines it has to be a joint decision and discussed not told. I was told I was changing to Imraldi and gathered all my research including costs and ingredients plus other patients responses and challenged it. I stayed on Humira I asked if I could be forced and rheumy said no. Please do your research.

Domhem profile image
Domhem in reply to Nyreedw

This is so interesting! Thank you so much, the wonder of this forum! Okay I will do some research and see what I can find out, thank you again

Green230461 profile image
Green230461

you can ask not to be changed over if you feel you are already on the correct prescription for you I did and stayed put 🥳

AgedCrone profile image
AgedCrone in reply to Green230461

On a slightly different track it seems GPs are checking the prices of our drugs & if there appears to be a similar drug but cheaper they are asking patients to change

I went online to find out how much the drug I was asked to change from was costing, and it was £1.14 per week, hardly what I call expensive. However, when I spoke to the GP pharmacist she told me they can only order drugs from companies that the NHS approve….and the drug I was on, was costing them far more than that.I have agreed to change, but with the caveat …if I get symptoms, I go back on the original….will see how that turns out!

When I asked, why doesn’t the NHS search around to find where they can buy these cheaper drugs when they are so short of money, she said “you tell me”.

So it seems the NHSS are encouraging GPs to spend money & waste time phoning around or writing letters…instead of putting their energy into trying to find comparable drugs at a cheaper price.

Why am I not surprised?

.

Green230461 profile image
Green230461 in reply to AgedCrone

Shocking isn’t it!😡

Amnesiac3637 profile image
Amnesiac3637 in reply to AgedCrone

There has never been any rational decision making in the NHS when it comes to procurement of supplies be they drugs or equipment as you probably know.

I’ve been baffled when, as a ward sister and we’d have run out of simple office supplies, we weren’t allowed to nip to the local stationers but had to go through whichever disgracefully expensive supply merchants the NHS were tied into and therefore ended up paying many pounds more than necessary. That goes across the board so it’s another example of the appalling waste of money we're all paying.

AgedCrone profile image
AgedCrone in reply to Amnesiac3637

Yes…. Nothing changes….do you remember when some very successful businessman was so exasperated by the state of the NHS’s finances, he organised a countrywide survey of expenditure and came back with 99% proof that he could save the NHS £zillions? The NHS refused to acknowledge it.

I believe the SSH then, is now the Chancellor of the Exchequer

Nyreedw profile image
Nyreedw

This is official gov guidelines stating joint decision

Gov guidelines on changing biologics.
AgedCrone profile image
AgedCrone in reply to Nyreedw

The drug my GP is trying to change was prescribed & categorically stated on every prescription “this xxxxx drug only”….

But tbh with the disgraceful financial position the NHS finds itself in….surely the the SSH & the Chancellor of the Exchequer should oversee some sort of budget review?

Nyreedw profile image
Nyreedw in reply to AgedCrone

GPs can't change RA meds only a Rheumatologist can x

AgedCrone profile image
AgedCrone in reply to Nyreedw

It wasn’t a GP med….. My GP doesn’t even acknowledge I’ve got RA. ..let alone what I’m treated with, despite every time, I see my rheumatologist, he writes to the practice with a detailed report on my condition .

Nyreedw profile image
Nyreedw in reply to AgedCrone

Ah right. It's just you wrote GP trying to change that's all. All my meds come direct from rheumy. My new new GP does do a check to make sure bloods etc are OK as he can't see mine as different trusts. What one are they trying to change?

Clare-NRAS profile image
Clare-NRASPartnerNRAS

This is not a drug we at NRAS are familiar with for use in RA. It is an adalilumamab biosimilar and has a licence for RA but not one that we've seen approved yet by NICE for use in treating RA in NHS? We have a lot of information about the introduction of biosimilars on our website that you may find useful in your discussions with your team nras.org.uk/?s=biosimilars

However there should be no change of treatment without your consent and it should be a shared decision. If they've not been able to have that good consultation with you and explain why the change then you have the right to not give your consent.

fizbom profile image
fizbom

My entracap was changed but didn't suite my so they put me back on the original one

Potatos profile image
Potatos

I was switched from Humira to the biosimilar Amgevita a number of years ago when biosimilars were first launched. At the time, the cost difference was considerable. I agreed on the condition I could switch back if it didn't work as well. It worked fine and the pens hurt less so I have stayed on Amgevita . I found this on line about the costs of the biosimilars for Adalimumab.

bnf.nice.org.uk/drugs/adali...

The costs are now very similar, especially for Yuflyma and Amgevita, Humira is still a little dearer. I couldnt find a date for this article though. Maybe a discussion with your team about the need for the change is needed.

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