Benepali - about to start, what’s your experience of it?

[Brushwork]

Amgevita didn’t work for me. I seem to struggle to tolerate some drugs and others have simply stopped working. So the next step is Benepali. I’ve read all the information I can find from various sources. I’d just like to hear your experiences?

[Mmrr]

Benepali initially worked for me. I improved for a while, but unfortunately it stopped working. I found it to be a clean drug, with very few side effects. Good luck.

[Deniseelk]

I have been on it for a little over 2 years ( I couldn’t tolerate Methotrexate) and also remain on Hydroxychloroquine. After the initial screening bloods for underlying infections, it was arranged for a delivery of the injections to my home ( need to be stored in a fridge) then a nurse from Healthcare at Home ( HAH) to teach me how to use the pre-filled injector pen ( very easy and I HATE injections but manage it). It took a number of weeks to show signs of working but I measured the improvements by what I was able to do that had been unable for some time ( open doors more easily, unlock car by key fob in my right hand, write, etc). I have never had any side effects at all. I take the injector pen out of fridge when I start to prepare supper then inject after supper ( let it warm up a little). I choose to not use the sterile wipes but shower, leave it 15 mins to let the little blood capillaries calm down then inject. I choose my thighs but many say stomach less painful. If I am honest it is quite “ stingy” whilst injecting but I tell myself it is only seconds and only once a week and the benefits totally out way this minor discomfort. I am so thankful to be granted this drug and just cannot imagine my life without it! Hope you get great success with it!

[28maggie11 in reply to Deniseelk]

I was on Benepali for 18 months. Had no side effects but found it did not help.

[Balletmum71]

Hi there , I've tolerated it well and although I'm off of it it's not due to the Benepali they think something else is going on as well .

Injections are fine and it worked within a month. Can't wait to get back on it.

Here's to Benepali working for you

[HappykindaGal]

I’ve been on benepali just over a year and it worked incredibly quickly. Within a month if I recall. Yes, the injection can sting. Apparently it’s because the liquid is pretty thick so releases slower too. It’s not awful though and over quickly.

I hope it works for you too.

[TPaine]

I am on it for nearly 2 years and it's has been a total game changer for me. I felt well almost straight away when started on it and overall have stayed that way so I can actually work a bit again without feeling half dead. I still,have to be mindful I still have RA otherwise do too much and the the flare will come, but settles quickly as long as I then rest and respect my body. I have only experienced itching as a side effect which seems worse during pollen seasons so take an antihistamine when needed. My hands look like normal pretty much these days and I have energy again. I just hope it lasts.... I am reducing MTX now as done so well and down to just 12.5mg weekly of that which is a bonus.

Good luck with it!

Tracy.