Etanercept / benepali

[Kerry-78]

Hi,

I was diagnosed with RA 4 years ago and was started on methotrexate which didn't help much so sulfasalazine was then added alongside, again I didn't get any relief. I was told 18 months ago I qualified for biological treatment but was reluctant to start this, after seeing the nurses last month and once again discussing this option I have decided to start with biologic treatment, I was told it would be Etanercept then when I saw the biologic nurse a couple of weeks ago I was told it would be a biosimilar Benepali, which has now scared me again as I was told there hasn't been as much research into it as Etanercept. My appointment with the rheumatology consultant keeps being put back and I haven't seen him for 2 years ! I do however see the nurse every 6 months. After reading posts on here over the last couple of days about methotrexate advice, drinking plenty, avoiding folic acid on methotrexate day, splitting doses all things I was never told I have even more concerns about starting the Benepali, does anyone have any advise or do's or dont's about Benepali

Thanks

[Witness2]

Hi Kerry, I felt worried too 8 years ago when confronted with the prospect of injecting Enbrel (Etanacept). I had injection site itching for 3 months which then stopped and mild headaches afterwards for a couple of days each time (and still do but they're less frequent now I've cut right back on caffeine). From my experience I'd say that Enbrel has been the best drug ever for controlling my RA. I am in remission. If biologics had been available 36 years ago I believe I wouldn't have the level of bone damage I have now. Benepali is a biosimilar which means it's not generic, i.e. not identical, It's a copy of Enbrel that is supposed to work in exactly the same way. I am about to start it and am hoping beyond hope that the transition won't involve new side effects and that it does actually work well for me, as Enbrel has. Personally I think you are really fortunate to have been offered biologics so 'soon' and I would definitely choose them over Methotrexate. That killed my libido stone dead, but once again this may only have been my reaction, we're all different. I think it is outrageous that you haven't seen a rheumatologist for 2 years and I'd be complaining about that in your position. I hope this has helped and not confused you further!

[Kerry-78 in reply to Witness2]

Hi,

You say I've been offered it so soon, I think that's what I'm probably worried about most, when it was first mentioned I thought it might be something to consider for the future but if I start it now what will there be later on down the line. After reading your reply I think I'm feeling more positive about taking it and I hope it has the same outcome for me as it has had for you, I would love to be in remission as this has ruined my life. I hope the change from Enbrel to Benepali goes well for you.

[Chester02 in reply to Kerry-78]

I’m on Benapali and it’s definitely not as good for me as Embrel was. I’m so unhappy as Embrel gave me my life back and now I feel like I’ve gone back 8 years to before biologic drugs! I’m in a lot more pain and my stiffness is so bad now. I know Benapali is cheaper for the NHS which I understand but is it right to suffer so much pain because of the switch. Do try it however as it may be fine for you and you never know unless you try it 😃

[GemsfromWarks]

I have been on Benepali for about 6 months after more than 8 years on Enbrel. As far as I can see it is exactly the same. It has been brilliant for me. Do have mtx injections as well and am gradually reducing these and will eventually just be on Benepali as I have been in remission for years and my specialist believes it is the drug which is controlling my condition. Click pens are easy to use. I always do injections just before I go to bed. Only thing to be careful of is keeping injections in frig. I'd say go for it. I hope it works as well for you as for me.

[Kerry-78 in reply to GemsfromWarks]

If I decide to start Benepali I was thinking that I might inject before bed, I used to take my methotrexate first thing but I was always sick so now take that at bedtime, I'm still sick the following morning but my theory is its been in my body longer so I'm hopefully not brining it all up. Should I avoid taking the methotrexate and Benepali on the same day ?

[GemsfromWarks in reply to Kerry-78]

I inject mtx on Monday and Benepali on Thursday. It works around if I go away for weekend. Do you take mtx tablets? If they make you sick have you thought of injections instead?

[julie01]

I was diagnosed in July 2015 and have taken Methotrexate since then, following a very short period of remission I gradually got worse from October 2016, Methotrexate was increased and sulphasalazide was added, several steroid injections failed to work and my ESR gradually increased, in May my DAS28 score was 6.3 and when I saw the consultant in June it was 6.5, I now qualified for biological and I was relieved that I could try something else. I had my first benepali injection yesterday with the biological nurse from Healthcare at Home, she came to my house yesterday morning and went through the medication and possible side effects, she also advise when not to inject and when to get advice from the Rheumy team. I then did the injection under her supervision and it was absolutely fine, just a small pin prick feeling. she advised to leave 48 hours between injection and methotrexate, not because they couldn't be taken together but so any reaction from taking the injection would be because of that and not the methotrexate, she waited for a further 30 minutes to make sure of no immediate reaction and gave me the pharmacists number from healthcare at home for any queries re reactions etc.

I felt reassured by her comments with regard to Benepali and also felt more positive with regard to controlling the RA.

I wish you luck with which ever choice you make.

Julie

[thelmar]

If you look back to my post a couple of days ago I reported on a conversation I had had with our hospital pharmacist. She was very positive about Benepali and might help to allay some of your fears.

Thelma

[Mall]

I changed from Enbrel to Benapali a couple of months ago and have not noticed any difference between the two. Benapali is etanercept. Pfizer researched and first produced and sold etanercept under the name of Enbrel. the drugs are as close as biological can be. Afterall no two batches of a biological drug is identical. As Enbrel is no longer on licence it can now be manufactured by other companies.

The NHS are prescribing Benapali as its first choice due to what Pfizer is charging them for Enbrel. Benapali is easy to inject than Enbrel.

[supermidwife]

Hi Kerry, I started Enbrel Last September and it has transformed my life. I can almost jump out of bed!! I can go down stairs quickly and without pain, I can continue to work in my job as a midwife.

I am due to swop over to Benpali next month, hopefully it will work just as well, I have been reassured by my Rheumi team that I can transfer back to Enbrel if I have any problems.

I would really recommend biological therapies.

[Kerry-78]

Thank you for all your replies and advice, there has only been positive things said about Benepali so I have decided I'm going to start it. My first delivery is due to be delivered next Wednesday then a nurse from homecare at home will contact me no I will be starting soon. I hope it works as well for me as it has for many of you.

[Delainey]

I get on fine with benepali and didnt really notice the change over from enbel.

However,I've now been advised to stop tramadol after 26 years, so that will be difficult to say the least.

There are so many different add ins for RA patients I take methotrexate and hydroxychloriquin and 5mg prednisolone. How they work out what to give lord knows!

I also take naproxen on bad days which does help. My GP prescribed this.