Benepali Issues Again: Does anyone else struggle to do... - NRAS

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Benepali Issues Again

Shamrockgirl profile image
13 Replies

Does anyone else struggle to do the Benepali injections? Isn’t it ironic that they expect RA patients to do this, when you are likely to have poor dexterity? For the past few weeks, I push down while holding skin in thigh apart (as shown how to & for about 3 years now) the pain arrives & wait for the first click. But it’s taking longer than it used to, you wonder if the damn thing is going in & by this time my hand really hurts badly.

I have heard of medication JAK’s that may do something similar to Benepali, but not seeing consultant until next summer, a long time away.

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Shamrockgirl
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13 Replies
julie1908 profile image
julie1908

Yes i do.. I find when my hands are bad it takes me 3 or 4 attempts to do as when i push down nothing happens so i have to move it away and try again. I do mine in the tummy but where my right hand is bad i tend to do it with my left hand into the right side of my tummy.

KittyJ profile image
KittyJ

First off well done for even getting it out of the inner packet 👏🏻I seem to remember you can get it in injections which would eliminate the need for pushing down on the pen but they may be more fiddly 🤷🏻‍♀️ Might be worth asking your rheumy about it.

helenlw7 profile image
helenlw7

I had Enbrel for 15 years administered in a syringe, and managed it every week. Two weeks ago I was changed to Idacio because the Enbrel stopped working earlier this year. Unfortunately the Idacio has come in a pen, and although I’ve only used 1 pen, I found it really difficult to push down the yellow top because of my wonky hands!

Wearylady profile image
Wearylady

I know how you feel,but I now inject into stomach,lie flat on bed and pull skin taught it does take some pushing but doesn't hurt, when I injected into thigh I found it hurt this made me tense up and probably made it worse.I do agree that getting the Benapali out of the packaging is a nightmare.

Shamrockgirl profile image
Shamrockgirl

Thank you for all your responses, helps to know you’re not the only one & not going mad. I’’m not seeing the Rheumatologist until July 2022 & when I saw him this recent July, it wasn’t such an issue. My biologics nurse phone appointment for this month now postponed until February 2022. I”ll see how it goes & maybe try & hang on until that appointment & ask then. But if it gets tougher, may have to call them.

I’ve also spotted somewhere that there’s a Benepali infusion, I wonder why that wasn’t a possibility?

Bethany02 profile image
Bethany02

Did put on this site it hurts especially because it's spring loaded think it should just be a normal injection but it's the whole thing about needlestix injury do think NRAS could see this and maybe speak to the company

Bethany02 profile image
Bethany02

Ps have also gave up with thigh as too painful

Maggsie profile image
Maggsie

I used to struggle with mtx and Tocilizumab pens but then discovered that I was doing it wrong. The spring loaded pens have a 2 step process. First you push the pen against your skin which slightly depresses the inner part and then depress the plunger to administer the injection. I only learned this when I got my husband to help as I was finding it too difficult!

KittyJ profile image
KittyJ in reply toMaggsie

Benepali is different, you just push the pen down, no button to push 😊

Pythagorus profile image
Pythagorus

I agree with comments made. The packaging for Benepali is beautiful and as good as Apples BUT is extremely painful and difficult for RA people to open.Also injecting into thigh I found was agony but lying flat on my back and into the abdo no problem (but not near tummy button) and no pain.Wait for the click,count to ten and remove.

Give it a go and let us know how you get on 😊

KittyJ profile image
KittyJ in reply toPythagorus

Someone from NRAS was going to look into the difficult packaging for us but we never heard anything back 🤷🏻‍♀️

Taffsmum profile image
Taffsmum

Hi, I was switched from Enbrel which was a syringe to Benepali and I was given the choice of syringe or pen so chose the syringe as you have more control. It might be worth phoning your rheumatology dept and see if your prescription can be changed to a syringe. Hope this helps.

Hollyhock123 profile image
Hollyhock123

I hate using the benepali in my thighs too. Now tense up too which probably makes it worse! And seem to have some leakage as well. Stomach much more comfortable, no leaks or drawing blood. I put it down to I have more toned legs than stomach… But that packaging! I have to ask my other half to open them.

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