Benepali : How are others coping with this drug. I used... - NRAS

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Benepali

Anndan
Anndan
15 Replies

How are others coping with this drug. I used to be on enbrel. Anyone else having problems with this new drug

15 Replies
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Pat9442

Seven weeks in and no side effects! All joints working better. Can's say ALL pain has gone but it is certainly minimal and I have my life back. Hooray for Benepali

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James53

Hi

I have been on Benepali for 18 weeks.

Transformational in terms of improved mobility and joint function.

Still some pain in hand and ankles but much improved.

As far as I can say it has been great for me BUT we are all different- meds react differently for each patient

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Mhairi54

Benepali has made a massive difference to me pain wise. I'm now in a very very different place to where I was this time last year. Started taking it in December 2016. This is my first biologic/biosimilar so nothing to compare it to. Still having some problems with my knee - pain but no swelling. Rheumatologist has advised that peripheral joints can sometimes be resistant to the effects of Benepali, so may add in another DMARD if it becomes swollen. But overall really happy with the effectiveness of this drug for me.

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Gameo

I have been on benny for six months now and it has given me a new lease of life my das score has gone down to 2.6 the pain I get when injecting last for a few seconds and l will put up with this as l feel better l know this cannot work for all (l wish it would) but all l can say is if you stay with it in the long run it may help you l also have stopped taking the only pill l was on (hydro) so here's hopefully you get pain free like some of your replies you have had good luck for the future

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Rheumyjoy

Yes I have had trouble with Benepali. I was on Enbrel for around 5 years. It made a difference to me within three days. I loved it. I have now been in benepali since August and have slowly gone downhill so much that my consultant had now agreed I can go back on Enbrel. Can't wait for it to start again soon. I have psoriatic arthritis. If you can't get on with it tell the consultant. Good luck. I know how you feel.

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Arthursslave

Rheumjoy.

I am having the same experience and have psoriatic arthritis x

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Thegreywitch

Started on this about 10 weeks ago, there have been great benefits the morning swelling and soreness and tiredness. But I was expecting so much more. I still have to pace daily activity and part time work. I still take pain killers every day..

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Paulajolo

I tried for 4 weeks. Had severe hair loss and burning itchy rash so had to stop. Waiting to try another biologic. Feeling very apprehensive as I seem to have allergies to most of the drugs including methotrexate.

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Arthursslave

I am so glad you asked this and really interested to see other replies.

I was doing really well on enbrel for 2 years and had to change to Benepalli ,I was ok for a few months but gradually my symptoms started to return and now I am in my worse flare for a long time.

Waiting to speak to my rheumi and hoping I can go back to Enbrel.

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Rheumyjoy

Sorry to hear you are having a flare up. Please tell your rheumatologist. Mine had said I can go back onto Enbrel but they are taking their time sorting it out. Can't wait to go back to Enbrel. Felt so good on it. Changed my life for the better but now I just feel awful on Benepali. Don't think I will use it any more.

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Arthursslave

Thank you ,I spoke to them today. Months course of steroids and if no better I can go back on enbrel .

Hope you can get back on it asap x

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Wishingwell

How long did you stay on Benepali before switching back please?

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Rheumyjoy

I was on benepali for nine moths and each month I slowly deteriorated from the good effects of Enbrel. Am now back on Enbrel thank goodness. Feel much better. But the consultant said at least I had given benepali a good try. Good luck to you

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Rheumyjoy

Yes am now back on Enbrel. Start this week. Hope it kicks in quickly like it did before. I must admit I am relieved to be off benepali. Watch this space

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happyh67

Hi there,

Oh I'm so pleased it's not a figment of my imagination! I was on Enbrel for 6 years and I was sooo much better than previously, so I thought I'd go on Benepali to save the NHS some money - it is supposed to be the same drug after all. I have gradually been regressing since I started on it in Jan. I've had hydroxychloroquine added into the Sulphasalazine 1.5g daily and Naproxen 1g daily that I take (can't tolerate Mtx or Lefluamide as they damaged my liver) but that hasn't helped so I am now fortunately going back on Enbrel. I'm praying that I have the brilliant results again this time. I'm having to rely on Zapain (30/500 codeine/paracetamol) to manage the pain and concomitant fatigue so hopefully I'll be able to cut back on that again.

I hope other people are able to get back onto Enbrel too.

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