Hi everyone
I’m just asking if anyone on enbrel has been told you need to change onto a new brand of injection called erelzi (I think) I’ve been told it works exactly the same as enbrel and that it will help cut costs on the nhs. What do you think? I’m a bit concerned about it as I’ve been on enbrel for many years and have been well on it.
Thanks
Hi. I have also been on Enbrel for several years and have had amazing results. Last year I was changed to benepali to save costs. I said I would give it a try to help save. Benepali is a bio similar it is NOT the same as Enbrel. Gradually I deteriorated and after nine months said I had enough. Asked to go back onto Enbrel and was allowed. Soon got better and have refused to go on any other bio similar. Hope this helps and good luck x
IV been put on benepali too I must admit don't find it as good as enbrel tho put I had a reaction to enbrel so they said to try benepali as it's just a little bit different IV not had a reaction with it but it doesn't feel as good
I’ve been told I’m changing to this drug soon, not be for at least three months though.
I asked my consultant last November if I would be changing to the new biosimilar drug benepali, he said yes, you will be getting a letter within the next six months. Asked if it didn’t work could I go back on enbrel only to be told no, well try you on another drug....TRY....I don’t want to have to start the merrygo round of trying drugs till I find one that works, when enbrel took me straight into remission five years ago. Understandably I’m not very happy about it at all, especially reading posts on here similar to Rheumjoys and nbw159 replies. I’m going to see my GP to see how I stand and see if I can just say NO I’m not going to switch.
I phoned last week to speak to a specialist nurse before I see my GP, if I don’t have to switch I would be wasting an appointment. Found out it’s not Benepali now it’s going to be Erelzi, never heard of that one. Letter not going out for at least three months. She kept trying to tell me it was the same drug......hello.......it’s a biosimilar drug, not a generic....I’m not stupid.... I’ve done my research into biosimilar drugs and I know all the ins and outs of why it’s a similar and not a generic, I know about the clinical trials, I know they don’t yet know the long term side effects etc etc.
She told me to only to look on reputable uk web sites to read up about Erelzi, that’s okay....but there’s nothing on the nras site, arthritis research and nhs choices.
I found out it was only approved to be used in Europe last June, that’s probably why last November I was told it was going to be Benepali. Both drugs are a saving (I think that’s if understood the pricing table right) of around 10%. See link below..
bnfc.nice.org.uk/medicinal-...
If I am right it really is such a small saving. You have to ask yourself is it really worth it from a patients point of view worrying if the drug will work the same. According to nice’s position statement about switching the decision to switch should be made between the clinician prescribing the drug and the patient....See link paragraph f
nice.org.uk/Media/Default/A...
Obviously I’m going to put up a fight about switching.
Paula
Hi Paula C
You have been very thorough with your research and the links are very helpful.
Really wish you and all those well who are in a similar situation. I have been down this road before some of you. I did the research. I wrote the letters. I did not give consent to a change. I am remaining on enbrel.
Let us know how your fight goes. With you all the way.
BG
Thanks birthday girl for replying, just pleased to see you were successful and didn’t have to switch, heard of a few others that’s not had to switch, gives me some hope.
I am trying up notes at the moment for when I see my GP, I don’t want to forget anything or get side tracked in the appointment. I’ll hand it to him when I first go in for him to read.
The specialist nurse told me in the telephone conversation not to do anything until I’ve received the letter about the switch and then to phone up for an appointment with my consultant to discuss the mater. I kept asking what he would do, she just said I don’t know, but she did say I wouldn’t be made to take anything I didn’t want to. Don’t know if that was her trying to tell me I wouldn’t have to switch if I didn’t want to without committing herself. But then on the other hand the consultant said I couldn’t go back on enbrel so then I start thinking is it a case that they won’t be prescribing enbrel anymore.
I just think that I should have some say into what toxic drug I inject into my body every week.
Paula
You are on the right track. My GP supported my letter writing to everyone. The Chair of my CCG admitted in writing that it was an exclusive decision for my Consultant and me.
So I sent my letter to the consultant and then had an appointment with him and after examining me he said that when a patient is doing well , bloods are good and/or in remission my drug regime should not be changed. His letter to me and my GP confirms this. So enbrel is still my friend.
Before all of this the rheumy nurse, out of the blue, told me that I had no choice as it was for financial reasons. I said no straightaway and kept repeating it.
She never said it was being withdrawn from production and I am not aware that the drug company is stopping enbrel as yet.
As you have seen government guidelines are clear. Only the patient and consultant decide. The patient has to give informed consent before agreeing any medical procedure or the taking or changing of toxic drugs.
It is ok to say no thank you.
I really wish you well.
BG
I hope my GP is the same. I’ve just booked an appointment on line with my named GP for the 16th April, it’s in the afternoon, I’ve got an appointment in the morning for my yearly checkup with a nurse specialist. My GP is really good, he’s got a no nonsense approach to things, he just tells you how it is.
Think you may if misunderstood what I meant about stopping production of enbrel. What I meant was it may be a drug taken off the list my hospital trust will allow to be prescribed.
I’m going to show the notes to my nurse specialist when I see her. I really can’t understand if a patients doing really well on a drug why they would want to risk changing. I’ve been in remission for five years now, I don’t need any pain relief, I felt enbrel start to do it’s magic the day after I injected it. It took me from a useless blob sat on the sofa and hardly able to walk to remission in 12 weeks. In my consultant own words to my GP following my 12 week appointment with him ...I had had a tremendous response to enbrel.
Enbrel gave me my life back, it gave me back to me, I call it my magic potion.
Many thanks again for replying I do appreciate it. Hope it gives hope to others facing the same.
Paula
Hi Paula & BG
Thanks for those links very helpful info! You should definitely be able to stay on enbrel it’s your right to choose your own medication not theres! What I don’t get is why change to something else if what your on now has helped so much doesn’t make sense what so ever.
I had call from the hospital yesterday trying to persuade me to change over, i said I’m not sure and that I’ll discuss it when I see the nurse in April to go over in more detail, but i know my mind won’t be changed. I got upset on the phone and asked if it was about money they said price isn’t even a problem as enbrel and erelzi practically cost the same.
The only problem they said for me to stay on enbrel was that everyone is changing to erezli so a few years down the line enbrel is going to get harder to get. I said that’s not my problem at the end of the day I didn’t ask to change medication. So for now I’m staying on enbrel and hopefully stay on it for as long as I need and hope you do to. It’s horrible having someone else decide what you should take.
Emma
Hello Emma was beginning to worry that I might of hijacked your thread so pleased to see my links helped.
I’m so glad to read that you haven’t got to change, much be such a relief for you and gives me more hope.
If I’ve done my sums right Erelzi is only £17.87 cheaper per injection than enbrel, so there’s not really much savings at all. I do think that Pfizer who manufacture enbrel will have to eventually reduce the price because of more biosimilar becoming available.
When I spoke to the nurse on the phone I too started to get emotional, I’m really worried about switching. I just can’t go back to how I was before I started enbrel.
Fingers, toes and everything else crossed I won’t have to switch. Will update when I’ve get more news.
Paula
Hello Paula C, I have only tried MTX without success and since then have been afraid to try other RA drugs. I suffer great fatigue and lately more pain. Can anyone tell me that after taking enbrel ( for example) or another biologic, does that heavy fatigue lift much or at all? Does pain lessen? Are joints easier to move? I know everyone reacts differently and we are all in different stages but I wanted to know some of the positives. The tv ads about enbrel & humera are fairly stark—and it’s hard to know if you will be that person dying from the side effects. Thank you.
I'm assuming that your not from the UK because you've mentioned TV ads so I can't comment about them having never seen them.
I've never really suffered from fatigue, it was more joint pain and stiffness with me. I've mentioned in my previous replies that enbrel worked straight away with me, I honestly felt it start to work the following day, 12 weeks later I was told I was in remission and todate, six years later I still am, I've had no side effects at all. I had one short lived flare in 2015, apart from that I don't have the need to take any pain relief at all.
You've obviously been searching on this site to find this thread, it's over a year old, the only reason I saw it and am answering you now is because I'd been notified that you'd responded to my post. It might be an idea to start your own thread and hopefully you will get some more answers to your question.
I'm still on enbrel, I haven't had to switch (well for the time being). I saw my consultant last November, he'd read my notes that I'd left with the specialist nurse and said I could stay on Enbrel. I know about a month ago they sent out letters to all patients on anti tnfs telling them they were going to switch to a biosimilar drug, I've not had one so it looks like I've escaped the switch. xx
Well done Emma. It really is ok, and our right, to say no to drug change when there is no clinical need to do so.
I was told I would, personally, be stopping other patients having the opportunity for these sort of drugs if I stayed on enbrel. It would be my fault. It was unkind and wrong and unprofessional.
I too have shed many tears and that was one of the reasons I wrote a letter to everyone in case I blubbed at the consultation or forgot something.
The fear of going back in time and losing all that has been gained suddenly changed my approach to my situation and I felt empowered to fight for my life.
As for the future of enbrel I have made a decision not to worry about things I can’t change. I have to leave that in the hands of Pfizer...... for the moment!
One thing my consultant did say was that if a patient is on ‘monotherapy’ and in remission they should not have a change of their drug.
Be thinking of you lots and wish you well.
BG
Ps sorry I didn’t reply to you first. Did not want to Hijack your post.
Birthday girl I think it’s an absolute disgrace what you were told about stopping others from having similar drugs if you stopped on enbrel, telling you it would be your fault. That’s emotional blackmail in my eyes and that nurse needs reporting to PAL’s.
I’ve watched a question and answer video from the Nras website about biosimilar drugs, it’s very informative and the question was asked if the money would go back into rheumatology and the answer was that it would be very unlikely. The money saved would be a Gain Share between the Hospital Trust and the CCG. In my eyes the savings is just a tiny, tiny drop in a very big ocean.
Interesting what you said about monotherapy, I do take 15mg of mtx along side enbrel, but I’m lead to believe the only reason is because mtx reduces the risk of your body making antibodies against enbrel. Not sure if I will be viewed as monothreaphy or duo.
I’m normally a person that doesn’t make a fuss and will go with the flow, but I just feel so strongly about this, it’s my health and well-being that’s being put at risk.
Paula
Thank you Paula. It’s been a dreadful time battling against these people. I have felt isolated. I feel for all who are going through similar situations.
I watched that video too and listened to the gain share view. I found it very difficult to watch and cried a lot when I realised I had been lied to. It is true that savings are shared between the CCG’s and Hospital trusts and perhaps others. It is shameful that patients are being lied to. You can see how those who administer gain share is making the decisions and not the patients DAS score or overall long term well-being.
A previous rheumy nurse told me that my funding for biologics, which was approved in 2014 for RD, is with me for life and wherever I live. That was helpful information.
I think as far the consultant is concerned he/she has to take the patients DAS score, physical examination, blood results and patient choice as the only reason to make changes to medication. It would be just as wrong if a bunch of people somewhere decided to stop or change a patients methotrexate to save money.
If patients are in remission, whatever the mix of toxic drugs they take, I believe the evidence is there to confirm they should not be switched.
My personal view is that the switching programme is seriously flawed. It is not transparent and is causing some patients who were doing well to relapse let alone the stress and worry.
Thinking of you and all those going down this road. Every day I am grateful for some form of control over this rotten disease.
BG
Hi Paula and BG
Yes they helped a lot gives me hope that I can continue with what I’m on now, I mix the enbrel myself as I’ve had bad reactions to pre-filled syringes and it seems like erelzi doesn’t have that option which is a plus. Don’t worry your not hijacking my posts! Its good to hear there’s other people out there with the same opinion as me, situations like this can make you feel lonely and don’t know who to turn to.
Thanks BG that’s so awful to hear they are trying to guilt trip you to change over by saying it would be your fault! That’s so out of order, I got a similar response she only said it would save money for other people who would need to go on biologic drugs but that was it.
Do you think I should write a letter to my gp and consultant saying I do not consent to change? I’m not sure whether to see how it goes with the nurse in April before I do anything.
Yes please keep me updated with how your getting on and I’ll do the same. So far I’m getting an enbrel delivery Monday and I made sure it was enbrel by asking a few times. It really worries me if a consultant can overrule this and just change you over to it.
Take care,
Emma
Hi Emma
For me writing a letter with my research and reasons for saying no was they best way forward. That way there could be no misunderstandings. My GP supported my decision.
My letter went, before any appointments with the consultant and I copied the letter to the rheumatology nurse and my GP. I also sent the letters recorded delivery.
A rheumatology nurse, pharmacist, GP or CCG do not have authority to make changes to our prescription. The decision about our choice of treatment is between the Consultant and patient only. Finance is not allowed to influence the decision and patients must give informed consent.
Wishing you strength and success whatever approach you take. Let us know how it goes.
BG
Hi Emma
I’m in the process of typing up notes to take to my GP. I’ve got an appointment in April to see my specialist nurse, it’s just a routine appointment but I’m going to bring it up. I’ve managed to book an appointment later the same day to see my GP. I’m going to take a copy of the notes with me when I see the nurse.
If you like I could pm you and we could share info we’ve found out about biosimilar drugs. I keep thinking of things to say and I keep jotting them down so I don’t forget.
I’ve phoned Pfizer up after reading your comment about being told the enbrel will be hard to get in the future. I’m waiting for someone to get back to me. What to know if it’s true or not in case I get told the same.
Here are a few links you may find helpful
nice.org.uk/Media/Default/A...
Last paragraph of the above link clearly states that the decision to switch is between the consultant and patient.
enbrel.com/hcp/why-enbrel/c...
This is the question and answer session I’ve referred to. It’s nearly one hour long but very informative. The professor said in the video that they do not know the long term side effects to of biosimilar, the second link states that enbrel first went into clinical trials in 1993 and was appovec in 2002. There’s data going back all that time about the enbrel, Erelzi was only approved to be used in Europe last June! Hardly any data at all. I want some say into what toxic substance I inject into my body every week. I was given a choice of three drugs back in 2012 and I chose enbrel mainly due to the fact there was so much data about it.
Paula
Pfizer have got back to me today. Been told there are no plans to scale down production of Enbrel.
Hi, I was on Enbrel for about 7 years; it rescued me from a dreadful state when nothing seemed to work for me. I recently got the letter telling me that I would be switched to Elrezi. I told the rheumatologist I was not happy about the change, but was really dismissed, with the usual stuff about it saving the nhs money and that they had not had any problems with Elrezi. No point seeing the gp, as I know from past experience that they regard anything concerning my ra as a decision for rheumatology dept to make and will not intervene.
I have just had my second Elrezi injection; so far so good, but too early to tell of course. The nurse who supervised my first injection said she had been changing patients over since about October. Clearly there has not been much time for any problems to become apparent. Obviously I hope I shall not notice any difference and am trying to be positive about it.
Benbecula could you please keep us updated as many of us will be switching and with so little info on Erelzi it could make us feel far more comfortable x
Yes, of course I will keep you informed of progress on Elrezi. I should have done my third injection today, but I have a cold so will hold off until the cold recedes; not a brilliant start. Feeling otherwise ok, some joint pain, but having gradually reduced my methotrexate over the last three years (have been on mtx for 26 years) I put it down to that. Rheumatology tell me blood tests ok, so possibly osteoarthritis may be the culprit with some joints.
I would be interested to hear the experiences of others who have made the switch from Enbrel.
Hi, I have Psoriatic Arthritis and have been on Methotrexate then humira but I had a severe allergic reaction to humira. I’m now about to start Erelzi, today in fact! Very nervous. If you’ve started it I’d be interested to hear how you got on. Thanks.
Enbrel
Waiting for Enbrel to kick in
Starting Enbrel
Enbrel to Cimzia switch
Enbrel
