Embrel v benepali

[Mikerem]

Hi everyone , I have AS , i was on embrel about 18 months and found it life changing , as I had been on lndomethacin for about 35 years, they changed me over to benepali about four months ago and at first didn't notice a change but slowly started to deteriorate pain and stiffness around my neck especially, also had red lumps around injection site, which caused terrible itching. My specialist has now evaluated me and put me back on embrel, just waiting for new supply can't wait ..... Did not work for me....

[28maggie11]

Not been on embrel but benepali not preventing pain. Tried taking mtx with it but it caused different problems. Waiting for nurse to get back to me.

[helenlw7]

I've been on Enbrel for 8 - 10 years and it works well for me. I'm dreading the time when I will be changed to Benepali because I haven't much positive news from patients changed from Enbrel to Benepali, unless someone on here can tell me otherwise.

[JGBH in reply to helenlw7]

Hi Helenw7

May I ask you why you think your Enbrel injections will be swapped for Benepali? Have you been told so by GP, consultant, nurse? I have been on Enbrel for over 12 years as I have RA. It gave me my life back... up to a point. However when I need to stop it (prior to procedure) it takes only 2 weeks before the joint swelling and pain return and it is difficult to walk.... Were you prescribed Enbrel by rheumatologist and for what condition, ie: RA, AS... ?

Take care.

[James53 in reply to JGBH]

Hi

I am on Benepali- never had Enbrel.

My understanding is that the government has decreed that as Benepali is much cheaper than Enbrel that Rheumys' move over to Benipali unless there is clear clinical evidence not to do so.

If I remember correctly this was explained in a publication by Arthritis UK I think.

I think Enbrel is about £9,000pa whereas Benepali is around £5,500pa.

The leaflet said nobody should be changed without consultation.

[JGBH in reply to James53]

Hi James

That is really worrying! Am seeing my rheumatologist next week for annual check up and hope she won't suggest a change. Do you have RA?

[James53 in reply to JGBH]

Psoriatic Arthritis- treatment regime very similar.

[helenlw7 in reply to JGBH]

I was prescribed Enbrel by my rheumatologist for RA and it has been very successful alongside mtx and steroids. It has also given me my life back to point, although I can't run and walk long distances as I used to. My understanding of Benepali is that it is cheaper than Enbrel and in these cost cutting times a change may be forced upon us.

[JGBH in reply to helenlw7]

Helen, thanks for reply. Indeed Enbrel is very helpful in giving those of us who tolerate it well a much better quality of life. How dreadful that patients'quality of life should be thought as of little importance by swapping an efficient drug for a cheaper one that may not give the patients such a good quality of life. It is stressful and rather scary to think we can be forced to accept a different treatment that may not be as efficient in relieving pain, probably not so good at delaying progression of disease either.... It makes one feel so vulnerable.

Let's hope our rheumatologists won't do that.... but...keeping fingers crossed.

[James53 in reply to JGBH]

Benepali is a biosimilar drug. All the tests carried out seem to indicate very similar benefits as Enbrel but much cheaper. I understand that Enbrel were asked to enter discussions to reduce price but refused.

The move towards Benepali is pan European.

Provided each patient has the same benefits I can see no argument for the NHS continuing to pay the inflated costs of Enbrel BUT that is dependent upon no loss of benefit to the patient

[helenlw7 in reply to JGBH]

I dint think they can change you over without consultation. I'll see what happens at my appointment in October? My view is why change something that works!

[Mikerem in reply to helenlw7]

Hi Helen I had a six monthly check up and was asked if I would try benepali which I agreed to try and was told if I didn't get on with it I could change back, I gave it a good try but was no good for me had to go back and specialist put me back on Embrel....

[helenlw7 in reply to Mikerem]

That's good to know that you had the option to change back.

[Wishingwell in reply to Mikerem]

How long did you have to stay on Benepali before they switched you back?

[JGBH in reply to helenlw7]

Helen,

Well, I agree to why change something that works.... but the NHS is not so concerned with that as it is with saving money.... even if patients suffer. It is sad and too scary. Am seeing my rheumatologist at the end of the month so do hope she won't even whisper the name Benepali!

[helenlw7 in reply to JGBH]

Good luck. Let us know how you get on.

[Mall]

Hi I have just had my prescription changed to Benipali so I am a bit worried if there will be a difference for me. Will let you know in a couple of months. From what I have read there doesn't seem to be a major difference chemically and I have been told that I will be able to go back on enbrel if I experience problems with Benipali. Each batch of any biological drug can be slightly different within certain parameters and I have noticed this occasionally with enbrel, sometimes it has not seemed as effective. With the NHS budgets so compromised there is a strategy to move folk over to cheaper versions of the "same" drug and Benipali is enbrels bio similar. The rheumy nurse told me the injection is easier to administer than enbrel, I sometimes struggle with the enbrel pen. Interestingly Benapali doesn't come with alcohol wipes and I was told by HCAH who deliver that these are not necessary but I could have a bulk order if I wanted some.

If enough people move over to Benapali then commercial competition will lead Pfizer to reduce there inflated prices. Drug companies ........ !

[Mall in reply to Mall]

Just wanted to add that a change to a bio similar drug is the same as changing from a drug like Panadol to a generic drug like paracetamol. Bio similar is the wording that applies to biological drugs.

[helenlw7 in reply to Mall]

When I was first shown how to inject Enbrel by the HAH nurse she told me not to use the alcohol wipes because they tend to harden the skin.

[Furle in reply to Mall]

Hi, I have been on Enberel for 8 years and worked wonders for me from the very first day. Been ' asked ' to change ' to Benipali at my next prescription so only two Enberel injections to go.

How are you getting on with the change over? Hope it is working out ok for you.

[Mall in reply to Furle]

Hi Furle, I wrote an update recently, you must have missed it. I have been on Benepali for about 8 weeks now. So far I have not noticed any difference. The injection is easier to use as you don't have to press a plunger at the top, I found this difficult when my hands were sore. I have not had any problems with rashes or infection around the injection site which some were concerned about.

Be reassured if you have problems you can go back to the original enbrel. The effective drug is the same, etanercept.

I hope it works as well for you as it seems to be doing for me.

[Furle in reply to Mall]

Thanks. Just joined the site and finding my way around it!

[Runrig01]

I have AS and started Benepali 9 weeks ago. I have never tried other biologics, but Benepali has been a game changer. I was so stiff, could only reach knees bending forward. I can now touch my toes, I am swimming, back at the gym after 5yrs on steroids and suffering. I have my life more or less back. I still get pains where the damage is already done, mainly thoracic spine, ribs and SI joints. I'm a very happy lady 😁

[popsmith1874]

I'm on Benepali alongside mtx 20mgs good days and bad days a lot off fatigue still