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Switching to Benepali

Hi,

Despite being told by my rheumatology Nurse that they have definitely no plans to switch patients from enbrel to benepali I received a letter in this mornings post telling me that is exactly what is happening.

I have been on enbrel since June 2003 together with methotrexate and have been in remission for several years.

Would be great to hear from anyone in a similar position and any advice will be greatly received.

Many thanks in advance

Paula x

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I was told last November that I would be switching to Benepali, then earlier this year was told it's going to be a newer drug called erelzi. Enbrel took me straight into remission nearly six years ago and I'm it happy at all about this. Done research into the new biosimilar drugs and not very happy at all with what I've read. I'm simply going to refuse to switch. I'm normally a person that wouldn't say boo to a goose, but I'm going to stick to my guns about this.....enbrel is working so well for me I'm not prepared to switch to a similar drug.

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Hi Paula, I feel the same about enbrel, I’m in remission and its doing its job. My hospital letter states its to save money to use elsewhere within the nhs and that it’s happening nationally. All about the money.

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It's not really that much cheaper. To me it's not worth risking my health and well being for such a small saving.

bnf.nice.org.uk/medicinal-f...

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NICE Regulations state patients must be consulted before being changed on to a Biosimilar.....if you Google Nice & Biosimilars you can read what the situation is.

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Hi Paula I'm on Humeria received a letter this morning telling me that all patients in Adalimumab and similar biologics will be changed to bio similar as from October. I as is everyone else worried as to wether this will work as well but Mid Essex CCG are rolling it out regardless 😱

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Hi,

Sounds like we don’t have much choice then. I’m at Colchester and was told last year they wasn’t following Ipswich & Chelmsford in changing over and staying out with the biologic. Obviously they have been told otherwise. I actually have an appointment with my rheumy nurse next month before the changeover in six weeks time so hoping she can fill me with confidence but my what I’ve read it doesn’t bode well. 😡

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I'm seeing the nurse on 15/10 I'm wondering if I will need to do das as it seems a bit ridiculous if it's not the same has anyone else gone in the new bio similar . Do you want me to send you a copy of letter . I'm under Broomfield but they're all merging at present so not sure if you're considered to be north Essex CCG . 💐

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Well i get my drugs delivered from healthcare at home and it just says on the hospital letter that my next delivery will be Benepali but to use up the enbrel beforehand which is six weeks worth. Just coincidentally I’m seeing my rheumatology nurse on 6th November, which will be my last enbrel injection.

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They are not suppose to just switch without consulting you first according to NICE guidelines. Read what it says in the last paragraph.

nice.org.uk/Media/Default/A...

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Hi Paula reading this letter the CCG has already implemented the changes and my letter has been sent by their chief pharmacist . I'll fill you all in when I go in two weeks . I'm not happy that there has been no patient consultation . They have put PALS number on it but we are all aware it's budget .

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I've been told by one of the pharmacist at Health Care At Home and the Arthritis Research helpline that I can just simply refuse to switch.

I was initially given the choice of three drugs and I decided on Enbrel because there was lots of data regarding side effects. Enbrel first went into clinical trials in 1993 and was approved by NICE to be prescribed in 2002. The new biosimilar drugs haven't even had a years clinical trial and the trials that they have done where small ones to cut down on costs. They don't yet know long term side effects. This information I got from watching Nras question and answer video with a Proffessor Peter Taylor. A very interesting video to watch.

I've read lots of posts on here from people who have switched to Benepali and while some report it working the same, some have reported it working for a time then they started to flare and they went back on enbrel. I did ask if I did try it could I go back on enbrel and was told no, we will try you on another drug. I'm not prepared if it doesn't work to have to start a merry go round of trying to find a drug that works when the one I'm on is working so well.

There is a glimmer of hope for me though. At my last appointment with a nurse specialist I brought the subject up, showed her all my typed up notes with information and thoughts about switching, she was impressed and remarked that I had done loads of research into the drug. The following day she phoned me after showing my notes to a senior nurse and I was told that they wouldn't make me take anything I wasn't happy with. I asked if that meant I wouldn't have to switch, was told I would have to discuss this with my consultant at the appropriate time. I was told by my consultant last November that I would be receiving a letter within the next six months about the switch, well, to date I've not yet received it.

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My nurse when I spoke to her last year regarding the switch said ‘over my dead body’. She also said she didn’t need the paperwork. On the letter today it says ‘we are contacting you because your consultant has deemed it appropriate for you to switch to Benepali’.

He never mentioned anything re switching when I saw him in May. Been with him since being diagnosed 18 years ago so quite upset by this.

I see my nurse next month, am so interested in what she has to say but I fear it’s gone over their heads. Or they just don’t care!

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I just think they we, the patient should have the final say on what we inject into our bodies, it's us that have to live with the consequences. They are after all very toxic meds.

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Hi Nessa, yes please keep in touch and let me know how it goes. Good luck x

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👍💐

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NICE Regulations say their must be consultation with patients....see the website mentioned above.

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Biosimilars are just about to be introduced in OZ. The OZ Rheumatology Society are currently having a bunfight with Govt about this. I beleieve they have succeeded in keeping their current patients on the original biological, if it is working well. Some of this is about cost saving (biosimilars are cheaper). But in regards for patient welfare, if what you’re using is working, you shouldn’t be swapped, as there is no research evidence on the outcomes for a swap from original to biosimilar. Hope this helps ppl’s arguments :)

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Hi I was on enbrel and got a letter for switching to benepali no consulting your on it went from remission to flares, fatigue, feeling awful complained lots of times they said it shouldn’t be like this as it’s nearly the same drug my response was if I chop your right arm off and replace with artificial well it’s nearly the same they had no comeback on that and within weeks was put back on enbrel took a few weeks to kick in but now back in remission, it just didn’t work for me they also said I was the first one it didn’t for since found out there are lots more who it didn’t work for but there were people who it did work for

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Hi Andy, thank you for your response and story, it seems to me they are switching everyone to the bio similar and hoping it will work in some cases so can save a little money😡 but messing around with our bodies during the process.

I spose I will have to go through the same and see what happens.

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It may be that the biosimilars save money but certainly not suffering. There are statistics on adverse effects when switching, you should have a right to see them before you make any decisions on switching. I find it very unethical to put patients in a situation where they infact jeopardize a often hard reached remission. I can see that there is a point starting with biosimilars when you are new to the biologic in question, but not to forceful switching.

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If your RA has responded well to Enbrel and is well controlled then there should be no reason to suspect that switching to the biosimilar Benepali will cause you any issues. However if you do experience any reduction in efficacy or unexpected side effects then you should be allowed to switch back. Have they said this in the letter you received? You may find taking a look at our resources on this topic helpful to take a look at nras.org.uk/biosimilars

If you have any further concerns do consider giving our helpline a call on 0800 298 7650. Any decision about your treatment should be made in partnership with you and you have the right to discuss it fully with your rheumatology team before agreeing to the switch.

Just to offer some reassurance on the topic, any biosimilar is tightly regulated and has had to meet very exacting standards set down by the MHRA, EMA, FDA NICE etc. inline with the regulations of the originator drug so while they [biosimilars] are 'less expensive' they are by no means 'cheap'! They will therefore offer the NHS considerable savings which of course may be reinvested to improve services for all.

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Hi Clare, no I’m afraid switch back to enbrel is not mentioned. It does say I should not notice any difference after switching. After reading other people’s experiences, I beg to differ. I also have not been approached by my rheumatology team to discuss this, just received a letter this week to be told it is happening and my next delivery will be Benepali. Coincidentally my six monthly assessment with my nurse is next month so will chat with her then.

Many thanks.

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Here is some reading on the subject.

gafpa.org/wp-content/upload...

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Thanks for that link Simba, I've booked marked it so I can print if off if necessary. Its extra ammunition for me if I am told I'm switching.

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Hi. My son has juvenile arthritis and had been on enbrel and in remission for some time when they suddenly switched him to Benepali last year. After a few weeks he complained that his fatigue had returned and then his joints all flared up again. I contacted the rheum nurse and asked for him to be switched back to Enbrel. She said that his case would be put before the "Benepali Committee" and we had to wait for about a month for them all to get back to her. Fortunately they agreed he could go back to Enbrel and he is now feeling well again. Benepali is definitely not the same as Enbrel and I don't think they should switch people over if Enbrel is working for them. I would definitely argue that you should stay on Enbrel. x

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I can’t believe they switched a child over, that’s ridiculous. Glad he is better but a shame he had to go through all that.

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Hiya

I went through the same thing this time last year. I have AS. When I was informed i would be changing to a bio similar for cost savings I was assured it would be no different and I would remain reasonably well (as I had been) so went with it. Within a month or so I went into a massive flare with lots of other AS symptoms including horrendous fatigue. I felt really unwell to the extent that I ended up off work long term. Sulprasalizine was added in with no effect then I was changed to Methotrexate also with only limited success on peripheral joints only. The pain stiffness and fatigue has been unrelenting. I have asked about returning to enbrel but told it wasn’t the bio similar change, it was the fact that I was getting worse so the only option was to change to another anti tnf.

I also had no choice but to put in for ill health retirement as I simply can no longer sustain my role as a detective in the police. This is currently going through.

Last month totally unexpectedly after speaking to an anti tnf nurse at my annual review about all of the above I have had enbrel delivered instead of Benepali.

I have taken 4 injections so far of enbrel and although I am no where near as well as I was on it before I am definitely feeling an improvement to how I was! I therefore am totally of the opinion that no matter what health professionals say there is a difference between the effectiveness of a biologic v bio similar when swapped over. It may be that those who start on bio similar drugs are successful but changes from one to the other are less effective as is my case.

I hope you manage to avoid the change over because for me the whole saga has had a significant impact on my wellbeing.

Good luck 😊

Lisa

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Oh rotten luck Lisa I feel for you . I'm so dreading the change as the Humeria is working so well . I'm glad your health is starting to improve but the fact you have been put in this situation is so awful especially as it's money led and look it's not been cheaper and for you personally an expensive experience . 🤗💐

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Hi Lisa,

So sorry and shocked to read this, it just doesn’t make sense to me, all that you have had to go through inc taking early retirement. I hope you return to better health now back on the enbrel.

I’m dreading coming off it but trying to remain positive, my RA was described as ‘Acute’ on first diagnosis 18 years ago and the worse my rheumatologist had seem In somebody my age. I went through failed meds for a good few years before qualifying for the biologic. Now they can just take it away, the same rheumatologist, so unfair.

Best wishes to you

Paula

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Hi all I had Healthcare at home call yesterday re my next delivery of Humeria . I asked her if she was aware of the change to bio similar in Essex CCG . She wasn't and advised me that my next prescription was issued for 8 weeks Humeria but that the next one is in the lap of the gods . Will update next week when I have my rheumatology nurse appointment 👍

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Hi, that’s funny cos I had an email from them this morning with details of my next delivery. I asked if it was Benepali as had had a letter from the hospital re the switching and I’m still waiting to hear back!

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