In going to be going on Benepeli soon, think that’s how u spell it, really worried about it , MTX doesn’t seem to work as it did after 15 years, is anyone on Benepeli and had good results from it, got asked if lm allergic to latex or rubber, that’s a worry! by rhumy nurse. Any advice would be grateful, thanks so much , Kate 2628.
Benepeli: In going to be going on Benepeli soon, think... - NRAS
Benepeli
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Mtx stopped working for me after 20+ years and I added Benepali and it made a complete difference to my pain and inflammation. I don’t know why the nurse asked about latex and rubber, I didn’t get asked that. Try not to get too stressed about it and give it a try, it didn’t work immediately for me, more of a gradual improvement but for some people they find it can work quickly. What is it your worried about exactly if you don’t mind me asking?
Hi. Some of the needles come into contact with the latex sheath, and then obviously the needle goes through your skin, so that's why they ask about that. Don't worry, they're not injecting you with latex. The good thing is you're on a biologics pathway now. They have to start with Benepali because it's the cheapest, but if it doesn't work there are loads of others you can try. I had slight cold like symptoms for the first couple of weeks on it, and some hypoglycaemia, and then no side effects at all. Good luck, I hope you hit the jackpot first time.
Hi there Kate, I have been on benepali these last 3 months. My mtx stopped working after 7 years. I am finding it seems to be working and I don't have to take many pain killers now. At the moment I am having a flare as have a lot of stress going on. I find is i inject into my tummy it doesn't hurt. I don't think I have any side effects at the moment. Good luck with it. Carol👍
Hi Kate, I am on Methotrexate and Benepali and feel good. I have been on Benepali a couple of years now and I am hoping to drop the Methotrexate . I have had no problem with Benepali except with the injection site the nurse advised me to use. I found injecting into my thigh was extremely painful so inject now into my abdomen and it’s completely pain free. I haven’t suffered any side effects. Good luck to you and I hope it works as well for you as it has for me
Hi KateI have been on Benepali for a couple of years now , it is a game changer
I don’t have any pain apart from flare ups which is rare.. I hope it works for you
Brian I
Hi Kate, I’ve been on Benepali for 5.5yr, with improvements in stiffness from day 1. I also continue with 25mg MTX for my peripheral symptoms, I have AS. I’ve had no side effects, and less infections than prior to starting biologics. Like pythagorus I found the thigh extremely painful, so switched to just using abdomen, which is completely painless. I’ve just missed 3 weeks due to a UTI, and desperate to restart it. This is the first infection in 3yrs. I wouldn’t worry about the question re latex. I’d urge you to try it, you can just stop if it doesn’t agree with you, no need to taper
I take benepali, for me it took quite a while to work but I'm far better off on ot than I was before. Thankfully to be taking it .
Just started taking Benepali ( also on MTX, hydroxychloroquin and currently etorocoxib and prednisolone) Have previously had MTX alone (horrible side effects ) Imraldi and Abatacept. Early days but current cocktail seems to be making an early impact on RA-reduced time for body to get working/ pain to be manageable, slightly improved stamina, less persistent swelling. I read a paper that had found taking at least 10mg MTX with biologic improves outcome so despite headaches and hair loss upped MTX to 10mg. I am feeling positive so far though seem to now have two persistent headaches. MTX top of head and Benepali seems to give me a low down back of head headache. But hey- I can turn taps on, carry kettle/ pan, chop veg, feed chickens and drive car!!
I have also had long covid which seems to finally be on its way - so though not a straight answer my early experience is positive.
Good luck xx
I have found Benapali really good it worked quite quickly for me ,give it a try.Hope. it is a success for you to.
I find Benipali a life saver so to speak. It's made a big difference to my life in a positive way . I wasn't asked anything about latex but had bloods and chest x-ray before starting. Don't worry and I hope it works for you too
Hello Kate…..I am quite new to Benepali (about 4 months) and it has given me my life back.I have no other treatments after lots of horrible side effects with DMaRDS and,for me,
Benepali began working immediately . I inject into thigh and , providing I go through relaxation technique, no pain there- unlike those who have (sorry to hear)
Haven’t even tried injecting tummy area.
Can now garden, drive, not drop things- no swelling and no pain.
Still can’t quite believe it.
Hope this helps
Let us know how you get on.
I’ve been on Benepali for 2 years now, following Methotrexate then Sulphasalazine, both of which I had constant side effects from. I inject once a week into my tummy, no problem whatsoever & id never injected before. Also I don’t have any side effects at all.
I do get very occasional flare ups in isolated areas, for example the exceptionally hot weather right now is causing pain in my arms/hands & a little in my feet.
All in all, Benepali has been a game changer for me, I work full time in retail & go to the gym/swimming pool a few times a week which really helps my joints.
Benepali is also known as etanercept. If you put those two names into the search box you will find lots of previous posts about personal experience.
And there is factual accurate information on the NRAS treatment pages:
nras.org.uk/information-sup...
Please have look -biologicals can transform how your body copes with Rheumatoid Disease and well worth trying. You may not find the correct one for you immediately as it's still trial and error, but don 't feel hesitant. Better life may be around the corner!
Hi I have just started on Benepali , I got a bit of burning tongue, also had a bit of cloud over eyes , didn’t get 1st injection all in as it’s different bro the pen I used for Abatacept, I have just started to feel a bit of ease after 4 th injection , injection does sting for few seconds I usually inject in top of leg gripping a good pit of skin , good luck 🤞