Benepali: Hello all :) Hope you are all well and... - NRAS

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Benepali

ccw93 profile image
11 Replies

Hello all :)

Hope you are all well and enjoying the sun!

At the weekend I took my first dose of Benepali. Wow, I haven't felt sick or had any nasty side affects like I'd previously had from methotrexate and sulfasalazine. The nurse was lovely and it finally felt like some of my questions were answered. So fingers crossed it helps.

Next month I am heading off for a two week trip to Europe. Does anyone have any RA travel tips?

Thanks! x

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ccw93
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11 Replies
flow4 profile image
flow4

Following. I'm off to Croatia in a month. :) It's my first trip abroad since diagnosis/treatment... In fact, my first proper holiday since 2009! 😍 So I'm interested in travel tips too...

ccw93 profile image
ccw93 in reply to flow4

Good luck and enjoy! I'm travelling down the coast of croatia! what part are you heading to? x

Sanbanan profile image
Sanbanan

Hi ccw

I start my first injection of Benepali this Friday so it's good to hear you have had a good introduction to it......I'm hoping for the same.

As a matter of interest.....are you also still taking Sulphasalazine with the Benepali? I have been told to take both but I see there can be contraindications when taking both. Very confusing.

I'm off to Greece for 2 weeks soon as well. Happy holidays and hope the Benepali keeps working for you x

ccw93 profile image
ccw93 in reply to Sanbanan

Thank you. I am just taking Benepali and neproxen. Not on Sulphasalazine, I was under the impression you couldnt take the two together. But could be wrong, have you called the nurse help line?

Enjoy greece!! x

Sanbanan profile image
Sanbanan in reply to ccw93

Yes will give them a call today and see what's to happen x

mikew72 profile image
mikew72 in reply to Sanbanan

hi i am going to be starting benepali soon and was told to continue taking methotrexate for a time as it helps the benepali take effect, hope this helps

ccw93 profile image
ccw93

Oo I dont think I could buy you all trinkets with my budget, sorry! I shall take lots of photos though :)

Lee_Evenden profile image
Lee_Evenden

Hi, I haven't heard of Benepali before so had to look it up! Am I right that it's one of the new biosimilars?

ccw93 profile image
ccw93 in reply to Lee_Evenden

Yes. I think it used to be called entercept?

Lee_Evenden profile image
Lee_Evenden in reply to ccw93

Hopefully that means that the NHS will start using them more, when I asked my rheumy about biosimilars she said that she didn't know when or if they would. I'm currently on mtx injections and hydroxychloroquine, but I don't qualify for the traditional biologics.

Hope it works well for you

Sanbanan profile image
Sanbanan in reply to Lee_Evenden

Hi Lee.

Yes this is a biosimilar of Etanercept. Much cheaper for the NHS so hopefully it will do exactly the same job as the original ones.

I think the process is still the same for getting started on them....ie, failing on DMARD'S, high DAS score, no improvement in swelling/pain etc.

I was on MTX injections which unfortunately didn't work for me and I had a bad reaction to Leflunomide. Sulphasalazine didn't do enough on its own so started on biologic Cimzia which helped a little but not enough...hence now Benepali for me also.

Good luck with your own journey. All trial and error til the right thing works ☺

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