Benepali pain 😩: Been using the Benepali pen for... - NRAS

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Benepali pain 😩

Blackangel profile image
Blackangel
β€’24 Replies

Been using the Benepali pen for 9 weeks & ohhhh the agony !! Take pen out for at least 6 hours before doing it , do it in my thighs but it's so bad that now I'm so anxious before doing it, even bought some numbing cream & put on 2 hours before doing it & still felt everything....tempted to try it in stomach today but feel abit ick about it, wouldn't be so bad if it worked but joint pain & inflammation still right up there, any advice would be greatly received 😊 was on amgevita pen before this & no pain at all but unfortunately no improvement on symptoms either πŸ˜•

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Blackangel
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24 Replies
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Runrig01 profile image
Runrig01

I’ve been on it 7yrs, initially I religiously rotated sites. However I found the thighs excruciating. So I decided to stick with my stomach. Mine are completely painless. I usually take mine out on a Friday night, then take it in the morning, except for when we have heatwaves. When doing the thighs I found ice a few mins prior helped.

Blackangel profile image
Blackangelβ€’ in reply toRunrig01

Thankyou for replying 😊 think I definitely need to try the stomach, will give it a go today 🀞🏼

Pythagorus profile image
Pythagorusβ€’ in reply toBlackangel

Hi Blackangel,I agree with Runrig injecting Benepali into the thigh is excruciating but into the abdomen no problem at all.I wonder if there is anybody on this forum who injects Benepali in their thigh and finds it painless.

Mostmoses profile image
Mostmoses

I am on Cimzia, not Benepali, but also find that injecting into my stomach is much less painful. I had to shift to thighs for a few months following appendectomy but have gone back now-it’s a relief (tho I doubt I will ever feel comfortable injecting anything!).

Scottishlad profile image
Scottishladβ€’ in reply toMostmoses

Interesting to hear from someone who has had the same experience of injecting Cimzia. I definitely got more of a reaction when injecting into the thigh.

Hollyhock123 profile image
Hollyhock123

Thighs hurt, and yes I think it’s worse as you tense with anticipation. Stomach is fine, but as I inject methotrexate as well I have to use thighs and stomach to spread it all out!

Blackangel profile image
Blackangel

Thankyou everyone for answering 😊 I had no problem when I was on amgevita pens but didn't work for my RA, but this one is a nightmare... This one also isn't working as joints painful, swollen & red & on my last blood test my inflammation markers were way up again, spoke to my consultant yesterday & seeing him in 2-3 weeks time & probably going to try me on another different one..hopefully the next one is the right one for me & not painful 🀞🏼🀞🏼

Haz58 profile image
Haz58β€’ in reply toBlackangel

I hope whatever you get works for you. Being in constant pain is the worst. I've been on Benepali since November and yes it hurts in the thigh but worse in my right than my left. πŸ™„ It was working but I got a chest infection then COVID so stopped it for 4 weeks. Since then my right leg gets a bit of swelling in the right thigh after the jab don't know why.Last week I tried to get myself to inject into my tummy but I just couldn't bring myself to do it!

I wish I could as everyone says it hurts less. I get so uptight now on injection day. 😞

Blackangel profile image
Blackangelβ€’ in reply toHaz58

Aww that's horrible...I also tried to do it in my tummy yesterday but just couldn't so I put an ice pack on my thigh which people had suggested & it did help abit but still painful & swore through the pain...hoping I've only got 2 more to do before I see the consultant & hoping the next one I try is better & actually works as been a year & half now since diagnosed, tried Methotrexate but was allergic to it had numerous bouts on steroids & steroid injections which did work but not a solution, Amgevita which worked for couple of months then stopped working & now Benepali which hasn't worked at all..the anxiety before injecting is real isn't it πŸ™„πŸ™„

Haz58 profile image
Haz58β€’ in reply toBlackangel

It's certainly is! I had methotrexate epipen first and that didn't hurt at all. It gave me gastritis though. Sulfasalazine and Benepali are the only things so far that haven't affected my tummy. 🀞

Blackangel profile image
Blackangelβ€’ in reply toHaz58

Aww let's hope that continues to work for you, I also take Sulfasalazine & no bad effects from that 😊

Jackie1947 profile image
Jackie1947

It's can be a nasty little bleep bleep. I take mine out of the fridge the night before and jab it in later the next day. I find it easier in the thigh than tum. Rubbing an ice cube on the injection area helps. In its favour it's the only drug that put my RA into remission. So a moment of ouch has been worth it

Blackangel profile image
Blackangelβ€’ in reply toJackie1947

Glad it's working for you 😁😁

Blackberrywine profile image
Blackberrywine

I found the stomach was best in terms of pain. Hated doing the thighs.

ATBr profile image
ATBr

I also started injecting benepali in the thigh but was very painful so swapped to stomach and is now manageable. Also it was about 3 months before I really got the benefits from being on benepali. Almost two years later and I am the best I have been since diagnosis 9 years ago. So don't give up hope of it working just yet, but of course discuss with rheumy when you get the chance. All the best!

PloddingOn1 profile image
PloddingOn1

I inject Benepali into my thighs, mostly it’s painless, on the odd occasion it does hurt but I think it depends on which area of the thigh.

I inject into my thigh. Cannot bring myself to try the stomach.The pain is erratic. I always take it out of the fridge about 8 to 12hrs before. I sit up on the sofa, with my legs relaxed and supported and inject into my thigh. I prefer to inject if I am warm as I tense if cold. I suspect lesss pain if muscles are relaxed but I may be wrong. For some bizarre reason it hurts me more on my left thigh. Although it is frequently painful, from inserting to removing the plunger, it is an ouch. An ouch, which for me does not last. An ouch, I can cope with. I suspect it depends on what the needle hits each time. Good luck and I hope you find a painless solution.

Zip1 profile image
Zip1

Hi l have tried everything and found the best way is to put it in the airing cupboard for an hour and then I have nearly no pain, definately bareable.. I inject into my thigh! I hope this helps….

KittyJ profile image
KittyJβ€’ in reply toZip1

Benepali shouldn’t be warmed up like that, please check the pil

Screenshot of how to store Benepali with β€˜do not warm’ highlighted
Doodlereggie profile image
Doodlereggie

I too had Benepali for about a year recently,must admit it did hurt but persevered.However,it did not work for me at all,so rheumy stopped it and gave me aJAK inhibitor instead,called filgotinib.One tablet a day,no injections,and has been best drug for me in over 20 years.I think the cost may be in same ballpark as Benepali,but for me is a wonderdrug.Might be worth a question to rheumy.Keep us updated how you get on .xx

Blackangel profile image
Blackangelβ€’ in reply toDoodlereggie

AHH so glad it's working so well for you & no injections 😊 will let you know how I get on...

Cutekitten13 profile image
Cutekitten13

I've been on Benepali injections since November 2023, thankfully it's working, but it is very painful, I inject in the thighs. I'm trying to work up the courage to do it in my ample tummy. When I did it with the nurse it was painless. I take it out in the morning to inject in the evening, but I do dread doing it. I hope you can find a less painful way to inject.

Angels54 profile image
Angels54

Hi , I use Benapali and it is painful , don’t put in your thigh, I put it 6 ins above my knee, then move it to the right of leg depending which leg you inject grab a good bit of soft flab you can put a cold pack on before you inject, do it on a slight angle and inject πŸ‘

PianoPlayer11 profile image
PianoPlayer11

I started benepali recently and found it very painful until I followed the advice from this site- take paracetamol 30 mins before injecting and DEFINITELY inject into tummy. Also take injection out of fridge for several hours before using.

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