Hi I’m new to here. I’ve RA and been started on Benepali for last 3 weeks.
OMG the injections are awful and for 2 days following I feel terrible. Fatigue, hot sweats, upset tummy, Headaches.
Been in touch with RA team and they may switch to Enbrel ? What’s that like ?
Any advice ?
Benepali is a bio similar drug to enbrel, it's a cheaper version, it's not exactly the same drug as enbrel. I've been on enbrel since 2012, I went straight into remission and still am. I was told I was going to be switched to Benepali and I objected and thankfully was able to stay on enbrel. x
Thanks for this. I agreed to try again but like previous 2 am so tired feeling sick, hot flushes and sweats. Feel crap. Do you get any side effects ? Does the injection hurt as Benepali hurts like hell. Also like bee sting for next day too.
I've had no side effects at all. I use a syringe, not the pen type. Because I already injected mtx my nurse specialist advised me to use a syringe being I was use to injecting myself, she said I'd have more control over it going in, I can do it really slowly, unlike the pen when wham it's in your body immediately. I've found that injecting into my tum is the best, leg did sting. I take the injection out of the fridge the evening before injection day, it's perfectly okay to do this as long as the temperature isn't over 25degrees. Sometimes it stings a little, sometimes I hardly feel it at all. If it does sting it's only for about a minute and it's well worth it.
I am probably moving to the MXT injections in a pen. I was told the pen delivery and doing it fast would hurt less than a skin blood prick test on the finger. Is that what you think? Needles and me don’t go together well lol
I hope it eases for you. Are the injections in a pen like thing ... like the MXT ones?
I've recently had my mtx dose reduced to 10mg because I am doing so well, (consultant said, which I agreed with that it's enbrel that's keeping me in remission), because it's such a low dose I'm now back on mtx tablet form. Both mtx and enbrel injections were a syringe not a pen. Needles don't bother me, I just get on with it. The needle on the mtx syringe was so fine I really didn't feel anything, it didn't sting at all either.
That’s such great news Paula. 👏🏻👏🏻😁Definitely don’t fix what ain’t broke as they say. I’m a wuss with needles. Brave sadly isn’t my middle name 🙃 I do try to be though.
I can imagine if you’re doing well on a med ... switching to something else would seem not a great plan at all and certainly very risky. The idea of triggering a flare up by such a move just isn’t worth it is it. I’m glad you were able to hang on to the enbrel.
Yes, I just didn't want to risk a biosimilar drug not working as well as enbrel. I read far too many posts in here from people who had switched and then they started to flare.
Same here but the side effects did go after about a month now fine. I was told to keep out of fridge for a few hours and found it was worse than 20 mins which the manufacturer said. Its taken 12 weeks till now but I'm not sure its as good as it could be yet. So patience is key none of the RA meds work quickly and the GP can give you anti nausea meds. I found that injecting at night was easiest.
If you can persevere, it is well worth it.
I have been on Benepali for about 3 years and has made a huge difference.
I take it out of the fridge about six hours before I inject and do it into my thigh. I tighten the skin or spread the injection site with my fingers as I find this reduced the stinging effect . I can’t recall any adverse reactions when I first started to inject. But as others have said it can take up to 12 weeks to get the best results. I hope this helps
Regards
Brian
See if you can persevere. Takes time to work. Good tips to your post. I was on drug for almost 15 years.
Thanks. I gave it Friday evening following ice cube on thigh til it melted. Still hurt. Had awful weekend again such fatigue. Had to drag myself out of bed and get going. Thankful I have a dog that needs walking to get me up and out. Hot flushes and sweats again. Upset tummy etc.
Back to work tomorrow and I’m so tired but needs must as I’m a children’s nurse.
Have telephone review again tomorrow to see how weekend has been. It just makes my time off horrible.
Let us know how you get on.
So reviewed today and hey are gonna switch me to Enbrel and see if that has less side-effects. I have requested using a syringe as well, that way I will get better control over the injection.
Feeling brighter today but still tired. Dragged myself out of bed for work. Also have had a work risk assessment as I’m a children’s nurse and due to COVID and these meds this now puts me in the high risk category so gonna have to see my boss and think what I am able to do if we get a second wave. I might rethink as well as I cannot let the children and families down, my team or myself. I should have started back in Jan but postponed it. To do or not to do that is the question.
Thank you for your support and kindness 😊💐
I've been on both Enbrel and Benepali and am now on Erelzi. I found Enbrel brilliant, Benepali and Erelzi not quite so good. But like Paula I use a syringe rather than the pen. I found them unbearable but with the syringe I can control the speed of flow. Quibbles really as these biologics have changed my life for the better. My rheumatology team have been fantastic so tell them how you feel. Good luck. XX
Thank you this. I will ask for the syringe rather than pen. I’m a nurse so can stick anything in others but when it comes to me ..... less so.
We’re people shielding due to meds ? I’m seriously worried about working and these meds having huge impact on what I’m gonna do, or not
There's a lot of evidence coming through that our drugs possibly give us some protection against covid. I've watched the past three Q&A that Nras did with consultants and that was coming over. My consultant told someone I know that it looks likely they give us some protection, another friend was told by a registrar that if we catch it it shouldn't get too bad. I read something a few days ago on an enbrel Facebook group I belong to that was interesting. The lady had had covid and her consultant told her that the reason she didn't get covid lung was because enbrel suppresses the cytokines that cause it. That is something I've thought for months now. They are using one biologic drug to treat people with covid.
If the biosimilar drugs aren't working as well as enbrel, ask to go back on enbrel.
I have suggested it Paula but the team are resistant! I'm still doing well but the effect Enbrel had on me within days of starting was outstanding. I take MTX as well. Cheers Fiona
Just insist, it's your body and you should have some say into what you put in it. The saving with a biosimilar drug is not a lot. Link below of cost to the nhs I found when I was told I was going to be switched. I think knowledge is very useful.
Hi I've been on Benepali for over 3 years now and do not take any other drugs with it. I have never had any side effects from it even from the first injection. I would say the same as others and take it out of the fridge a good while before injecting. Also I inject into my stomach not the thigh as it is no where as painful. I use the pen type injection not a syringe. Hope this helps. Stick with it you will feel loads better soon.
Hi Chuggie, I loved Enbrel, it was fab for me. Benepali I think is OK however I flare more on it I think. The pre filled syringe is a game changer rather than auto injector as the twist on the impact bruises and hurts. With a PFS you have more control and its fine. Good luck. Its a fab drug. Taken with MTX it really is of benefit. I am thinking of returning to Enbrel. Actually just recently due to patents, they are now the same cost. Best of luck xxx
I have been on Benepali for 10weeks. Yes injection hurts try taking it out of the fridge an hour before stick it under under your oxster for 15 mins before taking. I only use it on my tummy alternating sides as I have more flab their than on my leg. You can get a lidocaine gel to put on an hour before available from the chemist. I too come out in sweats with the drugs at any time of the day so you are not alone. Benepali didn’t work for me so about to start new drug today
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