Is anyone taking Erelzi?

[Benbecula]

Hi, I have been on Enbrel for about 7 years and have recently been told I am being switched to an alternative called Erelzi. It is sitting in my fridge right now waiting until I have used my last two Enbrel. Had a delay because I have been suffering from the cold cough virus thingy going round, so no injections for 3 weeks.

I am worried that, whilst Erelzi may in theory be the same thing as Enbrel, anecdotal evidence suggests that people often have a different experience when being switched to cheaper alternative medicines. Has anyone successfully transferred to Erelzi?

[Hobbits]

I never heard of this Enbrel alternative. I will be interested to read others responses.

I was in Enbrel for several years, it was a saviour. I was just recently taken off and went to Remicade infusions as I developed a second condition.

So many biosimilars now, can’t keep up!

[Benbecula in reply to Hobbits]

Than you, Hobbits. I am really worried about coming off Enbrel, which has kept the lid on my RA very well, and stepping into the unknown.

[Nickijk73 in reply to Benbecula]

I too will be very interested to read any responses on this one,as I’m also on Enbrel,but last time I saw the consultant I got the distinct impression that he wanted me off of the drug,as he said ‘as you’ve got no flaring at the moment,shall we stop the injections?’ I had to really argue my case stating that Enbrel was the reason that I hadn’t been flaring!! And yep,every time you hear stories about a biosimilar it never sounds encouraging..... but then again,it’s also one of those things that you only ever here bad stories as good never sells?! I’m sure it’ll be ok,with just similar teething problems that most of us had when starting on the biologicals at first,but please let us know?!

Hope all goes well

[Hobbits in reply to Nickijk73]

Wow, indeed the fact that you are not flaring, is the reason you Should stay on it!

It’s maddening!

[Nickijk73 in reply to Hobbits]

It’s cost cutting - pure and simple. I was meant to have an EEG done on my wrists,but because I didn’t complain about that particular issue on that day,he said there was no need to do it anymore. It’s a shame because the NHS has literally been run into the ground and they’re just storing problems for the future 😞

[Hobbits in reply to Nickijk73]

I completely agree, everything boils down to money. I do understand the reasoning however, why not let the one that are already stable, stay as is.

Any new patients could be introduced to the biosimilar first, and go from there.

Just finding one that actually works for you can takes years, took me two years to find a treatment that worked, two years of pain an hell on top of the 3 other years I was undiagnosed.

It could end up costing the system more, than the measly amount they save, if a persons remission wakes up because they wanted to save a few bucks. It just makes me boil because they play with peoples well being and quality of life.

I’m sure most doctors have our well being in mind. But at the end of the day, what do they care? They go home to their family and the patient has to live with the pain.

[Benbecula in reply to Hobbits]

I heartily agree with you, Hobbits. It seems a ridiculous policy to disrupt patients who are benefiting from Enbrel, possibly to unleash a host of new problems which then have to be dealt with. I have an appointment with the rheumatology clinic just before I am due to start the Erelzi and will make the point that I am not happy about this change. I shall certainly ask what monitoring they intend to put in place. Not long ago I had a 15month gap between rheumatology appointments - great if you are having problems.

[Nickijk73 in reply to Hobbits]

Hi

I wholeheartedly agree with everything you’ve said - I too went through almost 3 yrs of the wrong drugs before they put me on enbrel,and I certainly don’t want to go back to being three times the size from the waist down just to save a few quid !! Nope,your idea of leaving people that are settled and just starting new patients on it sounds like perfect common sense - but then again,that’s the problem...... the people that make the decisions generally don’t have any of it😝

[pjplant]

hi Benbecula, I have been on Enbrel for about the same time as yourself, I was told I would be changing to benpali but when they phoned me to ask if I had any concerns changing I asked if I could stay on Enbrel as I was not on any sort of even keel and to stay as I am until so, they agreed and so far they have not contacted me since, its been about 6 months now, I understand that the nhs has to save money where they can but it would not save them money because the last 3 times I have had my drugs changed I have ended up in hospital for a few weeks, I wish you all the luck in the world with this new drug, hopefully it will be better than Enbrel for you.

kind regards pete

[Benbecula in reply to pjplant]

Thank you, Pete, for your good wishes. I will report how I get on in due course.

[Paula-C]

I was told last November at a routine appointment with my consultant that I would be getting a letter within the next six months telling me I am going to switch from enbrel to a biosimilar called benepali. I asked if it didn’t work so well could I go back on enbrel only to be told I couldn’t and they would try me on another one. I don’t want to be in a position of having to start trying drugs when the one I’m currently taking is working so well. I am not happy about this at all. Enbrel took me straight into remission within the first twelve weeks of starting it and I still am in remission, no pain relief required at all, that was five years ago.....I’m sure you all can understand why I don’t want to change.

I’ve be doing research on the internet about benepali and I’m not happy with what I’ve read. We keep being told the reason we have to switch is because it’s cheaper, saving the NHS millions. From what I’ve found out regarding the list price to the NHS for the cost of benepali, it is just under £15 per injection cheaper, I read this on a NHS report date March 2016. There’s other things I’m not happy about and I’ve booked an appointment with my GP for early next month to discuss with him my options.

[Benbecula in reply to Paula-C]

I agree, Paula. Where will the cost saving be when the biosimilar either doesn’ t do the job or causes new problems which then need to be addressed? It doesn’t make clinical sense to take a patient off a drug that is working for them, nor does it make financial sense if you end up starting from scratch again. I shall ask about the possibility of staying on Enbrel, but I suspect the NHS wants to stop buying Enbrel full stop.

[Mall]

I switched from Enbrel to the biosimilar Benepali some 8 months ago and haven't noticed any difference. Those folk that are treated with a bio similar and have never been prescribed Enbrel appear to gain benefit from it. I am aware that some have reported on here that they have had unpleasant side effects but remember that when things go right folk don't tend to report it here.

[Paula-C in reply to Mall]

Thank you, nice to read a positive reply about the drug.