Anyone been refused switching back to Enbrel?

[Maggsie]

Has anyone been refused when they have asked to go back to Enbrel?

Well, I've finally bitten the bullet and asked to go back to Enbrel injections. I've had 14 weeks on Benepali and have gone slowly downhill to the point where I'm worse than when I started Enbrel 14 years ago. I get very little relief from the Benepali injections, maybe 1 or 2 days and I'm getting to the point where it's not worth the side effects for such short term gain. I kept thinking that my pain and swelling were being caused by various other factors but finally dawned on me that the benepali wasn't working once I get the enbrel out of my system.

I spoke to a rheumatoid nurse last week and she agreed to put my request to a consultant (I don't have one at the moment as mine left the trust and has not been replaced). Just waiting to hear if they'll switch me back to enbrel, if they say no I'll just make a fuss and maybe go to the PALS guys to make a complaint.

[Witness2]

Although the way the switch was explained to many of us gave the opposite impression, switching from Enbrel to Benepali on the NHS was meant to be a choice, intended to help the NHS save money. You are absolutely entitled to switch back. However, your hospital will have to obtain permission from the CCG ( central commissioning group??) based on the facts they are given about your decline on Benepali.

Do your blood tests support your decline? Mine did not but my Consultant could see the dreadful state I was in and presumably made a good case for my switch back to Enbrel. Why this is necessary I cannot begin to explain if it really is the patient’s choice! Maybe they want to track and record the ‘failures’ on Benepali, who knows.

It took only one injection of Enbrel to start my recovery so I hope you’re the same. Get well soon.

[Maggsie in reply to Witness2]

Thanks for your reply. I'm going to chase them up again tomorrow to find out what's happening and see if I can get a depo injection to tide me over until it gets sorted.

[helenlw7 in reply to Witness2]

I’m so so glad to read that it only took you one Enbrel injection to get you back to where you were before Benepali. I changed over in March and have been going downhill since about two weeks after the change over. I went to see my gp for a medication review and he was shocked at how bad I was compared with the last time I saw him. He emailed my rheumatologist and he has said I can go back on Enbrel. I now have to wait until prescription is changed.

[Vonnie10]

Fight your corner goodluck.

[andy9131]

Do it I was the same 5th injection of Benepali ended up in medical assessment unit with problems not just that pain was getting worse fatigue was getting worse saw my specialist nurse and she agreed I was on a downhill slope and would put it to consultant who agreed to put me back on enbrel just waiting now for it to come seems that benepali is not as good as has been made out

[Nik8210]

There was also talk of the company who make enebrel price matching to prevent some of the switching dunno if it happened but it might be worth an ask to see

[Eiram50]

No, is the answer to your question but I do wish you the best of luck.

I thought that the biosimilar when switching from enbrel, was Erelzi ?

Marie

[Paula-C]

I’m on enbrel and when I saw my consultant last November I asked if they were thinking about switching to the new biosimilar drugs. Was told that I would be switching to Benepali this year. I asked if I could go back on enbrel if Benepali didn’t work and was told ...No, we will try you on another drug. I’m not very happy at all about this, I’ve been on enbrel for over five years, it took me straight into remission, apart from one short lived flare in 2015 I don’t need any pain relief, it’s given me my life back!!

I’ve since been told it’s now going to be Erelzi, this is a newer, slightly cheaper drug, it was approved to be used in Europe in June 2017. I’ve been on a NHS website and the cost of the drug is £17.87 cheaper than Enbrel per injection. I’ve done lots of research into the biosimilar drugs and I’m more determined than ever I’m not going to switch. Ive seen reports of some people saying it’s okay for a while then they start to flare and some people have had side effects that they didn’t have on enbrel. Some have been put back on enbrel.

I did see my specialist nurse last April, she’s training on the job so to speak, only been in clinic for just over a year. I took my notes in about biosimilar drugs and my own personal thought and fears about switching. She admitted that I probably knew more about them than she did. She kept the notes and said she would speak to my consultant and kept stressing that I shouldn’t worry about it. She phoned the next day, she’d spoken to one of the head specialist nurse and she said that they wouldn’t make me take anything that I didn’t want to. I obviously asked did that mean I could stay on enbrel, she just replied that that was a conversation I would have to have with my consultant. Reading between the lines it looks like I won’t have to switch if I give valid reasons why I don’t want to.

I really think that we, the patient should have the final word on what drug we inject into our bodies every week. According to NICE guidelines the decision should be made between the clinician prescribing the drugs and the patient.

If I was you I’d make a fuss and complain....it’s your health and your body....your the one that’s got to live with the pain, not them. I’m normally a person that doesn’t say boo to a goose.... this is different, I’m going to fight like mad not to switch.

Hope you get back on enbrel soon. xx

.

[Maggsie in reply to Paula-C]

Thank Paula, I wish I'd never agreed to swap over I know it's going to be hard going to get back on Enbrel. What I don't understand is, if it's just about cost, why did they not ask those of us that were stable or in remission on Enbrel to try to manage with fortnightly injections to give an immidate 50% saving. I think I would have been ok with every two weeks or 10 days.

[Paula-C in reply to Maggsie]

I'm not going to agree to swap. I'm really going to stand my ground here. I've been told by Arthritis Research helpline and btpy one of the pharmacist at Health Care At Home that I can just simply refuse to switch.

I had cataract surgery last year and had to stop enbrel for five weeks, it was only in the last week that I started to know I hadn't taken it. But...I would think we will have some build up of the drug in reserve in our bodies and if we do over a long period of time take less of the drug it may dwindle away.

Hope you manage to get back on it.

[Hidden]

Went to my rheumy yesterday. I have been back on Enbrel for some time. She told me that Enbrel has been reduced in price for the NHS to compete with biosimilars. Much better back on Enbrel. Good luck. Don’t take no for an answer. Cry if you have to. IT WORKS xx

[Paula-C in reply to Hidden]

I've wondered if Pfizer will eventually reduce the price of enbrel, they've invested a lot of money in producing the drug and if sales are going down then they will have to start to compete with the cheaper drugs.

I saw my OT a few weeks ago and I told her about the impending switch. She's told me I've got some valid reasons why I don't want to switch. She said that some patients will just go with the flow and accept what's told them, but she's known me for several years now and knows I do my research into things and understand the drugs and the disease more than other patients. She told me to put all my views across to the consultant very clearly, but....I've told her I will be so nervous about it when I see him, I know it's a do or die appointment and I can get very emotional about it and I hope I'm not reduced to a blubbering mess in the appointment. I just can't go back to my pre enbrel days. I'm just dreading the envelope dropping on my door mat informing me about the switch.

[grumpa]

I have taken Enbrel for almost 10 years - it was like a wonder drug - for Ps but not PsA. I was forced to change to Benepali against my wishes and the drug had no effect on my problem. Consequently the Ps returned at a pace. I have now switched back to Enbrel but so much damage had been done it is taking time to get back where I was before. The consequences of specialist staff being on holiday, inability to actually speak to someone and too many people and forms involved to speed up the process led to it taking 6 weeks before I could inject any Enbrel. Sorry for the rant but it has affected me quite badly.

If I may provide an opinion I would suggest obtaining agreement before changing to an immediate switchback should the Benepali not work along with definite contacts to avoid delays. Finally, if the Benepali does not work tell them immediately you notice it. Do not wait until it gets bad!

I wish you luck and hope it works for you.

[Henkles]

Been changed to erelzi and have gone downhill drastically. What can i do. Tried Rheumy and told it was due to cost saving

[Maggsie in reply to Henkles]

Kick up a fuss, be a pest, keep ringing and asking for help. The nice guidelines say no one should be forced to change over. If you don't get anywhere with the Rheumy team, go to PALS and make a complaint

[Backchat57]

I have had a nightmare of a year Embrel for 15 years straight into remission. Switched to Benepali 18 months ago and deteriorated quite rapidly. It took 9 months to even discuss changing back to Embrel and then only via a phonecall. Consultant applied to CCG to ask for me to go back on Embrel but they refused saying I could only go back on Embrel if the hospital paid for it or I paid for it myself but that I could go on Humira. As this was my only option I stated this three months ago but it has not helped at all and I find myself back in the state I was 22 years ago when first diagnosed. Ironically I also received a blanket letter this week daubing that those on Humira will be soon changed to its biosimilar! I have my first appointment in a year with my rheumi next week and I will be waiting to see what he has to say so I can get my life back. Unfortunately this one size fits all approach has not worked in my favour. ...

Ps I liaised through PALS during this time and reluctantly even ended putting in a formal complaint all to no avail.

[Maggsie]

Hi Back chat, I did eventually get put back on Enbrel but to be honest I'm still not back to where I was before the change to Benepali. I've only managed this year via steroid injections. I'm (hopefully) seeing a new rheumy in early Jan so we'll see what she has to say

[nanof8]

I'm being refused to go back on enbrel even though benapali has left me in a right state of everyday pain yet they want to try me on some infusion which I don't want my quality of life on enbrel was so good how and who do I contact about getting back on enbrel

[Maggsie in reply to nanof8]

I pushed my rheumy nurse first of all, then my consultant and was finally put back on enbrel. If you don't get a positive response then try PALS.