OK so I had my rhuemy appointment brought forward due to bad flare ups and just no relief from the pain of RA. My nurse has decided to try me out on biologics. I am currently on sulfasalaxine and hydroxychloroquine. Gonna add the biologic benapil. I have had blood test and chest xray. Awaiting results before I start. Gotta get pneumonia and flu jab too. So doing a little research myself. Have read my booklet and looked around on this website. As with everything it's a little scary trialing a new drug and I am a tad scared. Feeling pretty tearful too. I know it could help but the side affects mention that c word and that's what keeps making me cry. Anyone else on here on this drug or trialed it. As I would like to hear some knowledge about anyone else's thoughts on this. I appreciate any help given. Thanks. Xx just trying to get my head around it all.
New medication. Starting on the biologics. Enbrel or ... - NRAS
Hi Treza I've been on Benepali since August alongside Methetrexate and was working well until December when I started getting all over joint pain and bad fatigue, so they've added Sulfazalasine to the mix to see if that calms things down, I've never had any side effects from the Benepali, the only advice I would give is to take it out of the fridge a couple off hours before you use it so it doesn't sting when taking it, good luck hope it works well for you xxx
I feel like you, just started Benepali last week and was also a little concerned about increased risk of skin cancer and lymphoma, but have decided that it is a risk worth taking to be physically well and active. Hope it helps you
The biologic benepali can (and does in my case) have a good result keeping things at bay. The hospitals are becoming quite strict with making sure it works via your das score, as it does cost a huge amount and I guess there are a lot of us taking it. I think along with methotrexate and hydroxychloroquin I seem to be doing quite well at the present time. I think my worst side effect is tiredness and I seem to tolerate all the other bad bits. None of us know long term what the result of these drugs will be but feeling well today and by coping most of the time a good quality of life does exist.
All the best to you and I hope you are a successful candidate for this medicine..
Make sure you take it from the fridge a couple hours before you take it - it stings less!
Thanks for all the advice. I hope all is going well with you all. Xx makes me feel slightly better knowing there's people out there on this drug. Xx
I haven't myself, though have gone through 4 DMARDs. Benepali is one of a new class of med, a biosimilar, in this case of Enbrel (etanercept). Quite a few have started on it or if on etanercept many here have said about being changed to Benepali, or one of the other two now available, principally because of price, biosimilars are less expensive than their anti-CCP equivalents. This from ARUK might be of help arthritisresearchuk.org/new...
I hope it helps you. Try not to focus on things which may never happen, turn it into positivity that it will help. It is unfortunate but once you need to progress onto anti-TNF's/biologics more do mention it in the literature, they're duty bound to give all side effects that were found in the stringent trials before release to market. One of the other biologics, rituximab, as well as being used in RD is also a cancer drug, as is methotrexate in large doses more regularly administered, so we can't avoid the word completely. I'm sure you'll be ok, but if it's of real concern do talk to your biologics nurse or Rheumy, they should be able to put your mind at rest. Or, you could call the NRAS helpline nras.org.uk/helpline, they will have plenty of help & advice to give.
Thank you. That's very informative. I feel more positive towards this drug.
Hi, I am in exactly the same position as you, it seems! I've tried methotrexate, hydroxychloroquine and leflunomide - had side effects from all of them and only one really helped but I just couldn't tolerate it. So now been off all of them for 4 or 5 weeks, and just been approved for Benepali, (Etanercept), and have had my blood tests and chest x-ray, like you, though no-one has let me know the results as yet and my rheumy has gone off sick for 3 months by all accounts. I had the flu jab last year, but couldn't have the pneumonia one as my local surgery could not get hold of any, so still waiting to hear about that. I have read the patient info leaflet that comes with Benepali and I must say I share your worries about the side effects but to be honest, but they have to list everything and anything that might happen, but it is not to say it will happen. When you weigh up the chance of remission and the chance of getting the big C from this drug, I think it is more likely it will be the remission that we get. I am looking forward to getting started on it and may main concern is that it doesn't give me the nausea that methotrexate did, or the runs that leflunomide did! Try not to over think the side effects or you will worry yourself silly. But do discuss any particular concerns with your rheumy nurse who is there to answer your questions and reassure you.
Thanks very much for your words of advice and it's nice to know there are others out there with the same things happening. I don't think. I will get my pneumonia vaccine. As my surgery has none but they said they was going to contact others for help. It's a worrying time. But as everyone's been saying I must focus on the good part which is not having any pain and inflammation or burning sensation. I have tried all the dmards and for two years the combination worked but it feels like the past 6 months have been constant flare ups and aches and pains. No let up. So hoping for some relief. Try to stay positive. I should start my new drug in two weeks time if everything is OK with my xray and blood tests. Fingers crossed. Nice to know there's people out there that care. Thanks everybody. Xxx
am on benepali, day after jab I take it a bit easy but other than that no side effects. All of our bodies are different so reactions are different . Has given me my life back....
Hi Treza, I have taken etanercept for a number of years, initially Enbrel and for the last 8 mths Benepali. It has been around for quite a long time and is being produced off licence now so the cost has come down but it is still relatively expensive. Biosimilars are the off licence equivalents of biological drugs, they are still the basic drug, Benapali is etanercept.
I take it along with 25 mg methotrexate injection. It does suppress the immune system so it is important to have pneumonia and flu vaccinations, also to be checked out for hidden TB infection. I also use factor 30 suncream if out in the sun for any length of time. I never suffered any side effects or serious infections, although there are reports on here from those who do. As a useful drug in controlling my disease it has been good along side methotrexate but I think it has become less effective over time.
If you need emergency surgery you are at much higher risk of infection and planned surgery would involve you coming off the drug several weeks before hand. This was significant for me in that I had a fall and broke my shoulder badly and was given 20 minutes to make the decision as to risk having emergency surgery or not. I chose not to and fortunately recovered well but It was a longer and more painful recovery with the prospect of future planned shoulder replacement.
The Benapali injection is quite easy to inject, I found the Enbrel injection quite difficult if my fingers were stiff. I always take it out of the fridge and allow it to reach room temperature for 15 minutes prior to injecting and I do not use an alcohol swab before on the injection site, this lessens any sting.
Good luck with it and do push your G P for the pneumonia vaccination.
I’ve been on Enbrel since 2005 and it has worked very well for me. I’m changing to Benepali on Tuesday, and asits the same drug under a different name, I’m hoping my body won’t spot the change!
When I started Benepali I was reassured that C word is very rare.
You don’t mention you are taking methotrexate I heard this can help keep the c word away. It was on the news recently.
Good luck I looked at these X-rays and tests were good for as it reassured me that I was clear of hep b and c and HIV and TB.
I work in an acute Hospital so at risk.
I live in the US and I’m on Enbrel. I had this same talk with my rheumatologist about cancer risk. Her response was that untreated RA and inflammation also carry a cancer risk, as do all of the RA drugs even sulfasalazine. That being said, the Enbrel has made me feel as close to normal as I have since diagnosis. The pain is less and the fatigue is sooo much better. It has been a blessing to me and I pray every single time I inject myself that it will have the desired effect with no negative side effects. I sincerely hope you have the same relief with your biologic. Best wishes.
I’ve been on Benepali for 8 weeks now and it seems to be working well. I’m also on Methotrexate, Sulphasalazine and Hydroxychloroquine which didn’t really help much. Apparently I have an aggressive RA that doesn’t react easily to DMARDS but feel so much better than a year ago so hopefully be the same for you 🙏
Yes it's working for me as well had 3 months of it and I'm feeling less pain and no fatigue just hope it lasts it will be worth the risks and I was very worried abt side affects but I've been fine ........
Hi, I started Benepali in December last year and same as popsmith1874 all i wou;ld suggest is make sure you take out of the fridge plenty time before you take it it can be quite uncomfortable otherwise, but regarding side affects i also take alongside MTX and to be honest i havent noticed any different side affects at all and it certainly helps to reduce the flare uos and along with pain relief i have more good days than bad,
Hope it works out for you
I had the worst reactions to Enbrel and Humira I have ever had in my life. I Would not take these unless I was dying. My health will never be the same.