Benepali

[Lottiemoocat]

Hi. I've had R A for 16 years. Am currently on methotrexate tablets 20mg. I was on enbrel injections for 10 years,which gave me a new lease of life. Have now been changed to benepali injections,12weeks ago. I am now back to feeling tired,fatigued,in more pain,and generally not good. Has anyone else had a bad reaction to the benepali. Not working for me. x

[Matilda_1922]

What dose are you taking

I’ve been started on 25mg weekly. This is half the usual dose.

Started in November have had 10 doses had a flare late December so had a depo medrone jab so my symptoms are better but not 100%.

Hope you get sorted soon I have seen this before that change from embrel to benepali increases symptoms and pain

[Lottiemoocat in reply to Matilda_1922]

I'm on 50mg weekly. Have been advised to see my rheumatologist,by the healthcare at home team.

[Astral]

I was changed from enbrel to Benepali too. For the first 6 months I was fine but then had one flare after another for the next 6 months! Rather than start on something new I asked to go back onto enbrel and was able to do that. Enbrel is working well for me again so maybe you could ask to be changed back to it?

[Neonkittie17 in reply to Astral]

One should not have been made to change from a drug that worked well and made to go downhill. Feel very strongly. I have had a lot of pressure to change from my med and I won't and my rheumy supports this. A recent chat too with my rheumy biologics nurse had her livid I'd been pestered and pressured. She said she's disgusted and so are the rheumy team that the regional office of the hospital pharmacy are harassing patients in this way and we should say a big no to this. It's everyone's own choice and don't be pushed into moving off a stable original medication to a biosimilar.

[Lottiemoocat in reply to Neonkittie17]

Didn't get a choice,just told I was being changed to benepali,due to it being cheaper! x

[Lottiemoocat]

I'm hoping I'll be considered to go back on enbrel.

[Vonnie10]

Yes I was good for the first 12. Weeks or so and then bang it stopped working , they should just leave people alone if there doing ok, shame they changed you.

Eve

[Neonkittie17 in reply to Vonnie10]

Totally agree .. Don't make a patient go downhill and risk more joint damage.

[helenlw7]

I’m finding most of these comments a bit scary. I’ve been on Enbrel for about twelve years along side 20mg mtx. Although my life isn’t anything like it was before RA, I’m getting along ok. I had a letter from the hospital saying about the change over to Benepali. For me it will be next week. I’m worried now that I’ll be taking a backward step. The letter did say I could go back on Enbrel, but I’m wondering how bad I’ll have to get before being allowed to change back.

[Lottiemoocat in reply to helenlw7]

Think it's 12 weeks. Healthcare at home have advised me to see my rheumatologist. So will ring them today. Good luck next week. Hope it works for you. x

[Neonkittie17 in reply to helenlw7]

I'm really surprised they are doing this after 12 years. Is there still time to phone your rheumy and say you want to stay on Enbrel? You are perfectly wbritked to say no. Don't let them bully you. Hospital pharmacy have tried that with me. Either way good luck. x

[helenlw7 in reply to Neonkittie17]

Apparently everyone at my local hospital are being changed over!

[Neonkittie17 in reply to helenlw7]

It's not compulsory! 😐x

[helixhelix]

If you put benepali in the search box top right you'll find other posts from people in similar position. it seems that if your start with benepali it's ok, but if you switch from enbrel then quite a few people have problems. Most of them seem to have been able to argue to change back. Good luck.

[Lottiemoocat in reply to helixhelix]

Yes,I've found lots of us are suffering more on the benepali. I'm hoping they'll put me back on the enbrel. x

[Neonkittie17 in reply to helixhelix]

Yes totally agree .. It seems if you switch you can have problems as the biosimilar can lose its efficacy quite quickly. I've refused to change from my med to a biosimilar.

[sappy]

Hi yes I have exactly the same scenario. I’m in the process of taking Methotrexate as well as the Benepali as apparently my body has started making antibodies to the Benepali, I am not yet convinced that it is the solution but have to get to 12 weeks before they will even consider it could be anything else ie the Benepali itself not being as effective as Enbrel was for whatever reason.

As a result of all this I have been back to a lot of pain (in even more places) and the most awful fatigue I have ever known.

I hope u get it sorted quicker considering you are already on Methotrexate.

Good luck Lisa

[Lottiemoocat in reply to sappy]

Sorry to hear you're suffering too. Hope the methotrexate helps. x

[Lincolnimp2457 in reply to Lottiemoocat]

I am on methotrexate injections plus hydroxychloroquine but in so much pain so on 23rd of feb 2018 I am expecting the rheumy to change my meds so thank you all for posting the problems you are all having - I know it is awful that you are al suffering as well but it really helps me when I see your posts.

[Matilda_1922]

It seems like the 12 week mark is the point where it works or not. They are waiting for the 12 weeks to assess me again. This might be the reason why they went with 25mg weekly although my letter stated 25 mg twice weekly initially. I feel there might have been an error somewhere between seeing me and sending prescription to healthcare at home. First of all it was 8 weeks then review it was at the time I had the flare in December. I had a depo medrone at this point. So 12 weeks is next week Friday but there was talk that review maybe 3/12 so that will be 12/2/18. My symptoms have reduced but not 100%. I’m continue to struggle at work.

Just a question when are you usually notified by healthcare at home for your next delivery.

[Lottiemoocat in reply to Matilda_1922]

I get a phone call about 3 weeks before delivery. x

[Matilda_1922 in reply to Lottiemoocat]

Thank you

I will wait to call them when I have 3 injections left.

[popsmith1874]

Hi I'm on Methetrexate 20mgs and Benepali 50mgs a week, I've on Benepali since August and Methetrexate 3 years I was fine at first but I think it's stopped working, I was given a steroid injection two weeks ago and if that doesn't settle things down then their going to look at different treatment

[28maggie11]

I was on Benepali for 18months but every three months I needed a steroid jag to keep me going. I was never on embrel. Now started humira had first injection last week fingers crossed

[Lottiemoocat in reply to 28maggie11]

Hope it works for you. x

[keeta]

I haven.t been on Embrel .just meth sulfz and benepali.and its not helped with pain swellings or fatique .but they talk to you as if your stupid aswell aa in pain.

Good if it helps some .just not me .