Benepali versus enbrel - worried?

[pm52]

Hi there, I have been injecting Enbrel for two years and it has made a difference (I have psoriatic arthritis and ankylosing spondylitis), I also inject methotrexate. I have now received a letter from my hospital informing me they are withdrawing Enbrel and replacing it with a"biosimilar" benepali to save money. Is there anyone out these who has experienced similar oe. changing from Enbrel to Benepali, and did they experience any side effects, I am quite concerned because this is new and they do not know what the long-term side effects are.

[Astral]

I had to change from enbrel to benepali about four months ago and like you I was concerned because it's new and I didn't like the idea of being one of the first to use it. However, the changeover was problem free, I have had no side effects so far and it seems to be as effective as the enbrel. I find the pen easier to use than the enbrel pen and it is almost pain free! Good luck with it, I hope it works well for you.

[pm52 in reply to Astral]

Thanks Astral, I hope it works well too.

[RA2002 in reply to Astral]

So pleased to discover this link - I’m about to transfer so will follow others’’ experiences closely!

[popsmith1874]

Hi I'm on Benepali and it's been working great up until this weekend when the fatique kicked in, but I think because I've been pain free I've been over douning it at the gym and it's caught up with me so I'm relaxing in bed today

[lamore08 in reply to popsmith1874]

Hi I've switched from enbrel to benapali too and have found after a few weeks on it my fatigue has gotten worse. I am worried that it is not working well. Did your fatigue improve?

[Mandalou]

Hi pm52

You could be me posting, I too am about to be switched onto Benepali so totally understand your concerns.

I've got 5 weeks of Enbrel left and the Benepali is being delivered next week.

I've heard the injection us even easier than Enbrel.

My Rheumy nurse said to think about it like Nurofen ( brand name) and Ibruprofen (generic)

So the active ingredient in both Enbrel and Benepali is Etanercept.

Good luck and we can compare notes in a few weeks time.

Mx

[pm52 in reply to Mandalou]

Hi Mandalou. thanks for your message, I have 4 weeks Enbrel left and have no idea when the Benepali is being delivered, just received a letter from the hospital saying they would be in touch again, so now worrying that there may be a gap. Will let you know how I get on and we can compare notes. x

[EmmaS-NRAS NRAS]

Dear pm52,

Hopefully the posts above have reassured you somewhat regards the Biosimilar you have been switched to but please do contact the NRAS Helpline or contact your rheumatology team if you have any other concerns or questions.

NRAS has been involved in previous NHS England workshops on Biosimilars and we have lots of information about them on our website here: nras.org.uk/biosimilars

We are also keen to hear your experiences (both positive and negative) about switching to Biosimilars so please do get in touch with us using the email address on our website.

Kind regards

Emma-NRAS

[lamore08 in reply to EmmaS-NRAS]

Hi I have just joined here after discovering these posts. Like the others I have switched from enbrel to benepali and after a few weeks I have found that my fatigue has gotten noticeably worse and I am worried that benepali may not be working quite as well for me. I was wondering if you have been informed of many people experiencing what I've described or if it could just be a flare up for me? Thanks

[pm52 in reply to EmmaS-NRAS]

Thanks for your reply Emma, but I have not switched. The pharmacist at my hospital tried to persuade me but both my physiotherapist and even my consultant quietly advised to remain on Enbrel as long as I can. At the moment I can choose, I guess the time will come when I will have no choice and I will be moved over to Benepali, but from what I have heard it is not as good, so I am sticking with Enbrel for as long as possible.

[RA2002 in reply to EmmaS-NRAS]

Thanks. My hospital has only just made the switch so I’m a bit behind. That said, it’s good to hear positive responses to Benepali.

[pm52]

Thank you Emma, I will have a look at that link to your website and will let you know how I get on - good or bad.

[Befy]

Hi, I switched from enbrel to benepali and three weeks later my fatigue is the same as before starting enbrel. I also notice more pain and stiffness, it is definitely not working for me unfortunately

[pm52]

Oh dear, that is not good, any chance of going back or is it too late? I am glad I had the choice and stayed with Enbrel.

[kirovfan]

I was on Enbrel for more than 7 years and considered it a miracle drug as it alleviated all of my symptoms and no more pain, prior to Enbrel I was on a cocktail of NSAIDs, painkillers and narcotics.

I was changed over to Benepali at the end of January 17 and by the end of March started getting pain again. I've just been to see my physio today and all of my measurements are worse than they were at my last assessment in March 17 and my pain scoring has gone from a set of zeros to a mix up to 8. I feel as though Bengali "runs out" by Thursday and I have to take painkillers again.

I'm really upset that my limited mobility has decreased and am now under review to go back on Enbrel.

To add insult to injury, I read a report today that stated Bengali is 10% cheaper than Enbrel and find it hard to believe that I (and presumably others too) are having to change for such meagre savings.

[Hidden in reply to kirovfan]

Can u get pregnant on this drug ??

[kirovfan in reply to Hidden]

Sorry to be flippant Sarah(after reading all the downers on Benepali), I can't get pregnant - but I am a man! Being serious you should ask your consultant, they should know

[Hidden in reply to kirovfan]

Thank you for reply . Um yes very impossible for yourself I see lol

[Jenxy]

Hi,

I was taking Enbrel for a few years following more than seven years of Methotrexate.

I was switched to Benepali, with no notice from my consultant. I was informed by the medication delivery team that I had been changed over. This was about 4 months ago. My PsA has slowly been taking over me since then; fatigue, niggling pains turning into major aches. Can't sit comfortably for more than half an hour - can't lay for more than an hour. I'm fed up of my body aching. NSAIDs aren't touching it. Cocodamol works for an hour but leaves me feeling spaced.

Sorry this is turning into a bit of a rant! I try to stay positive and see the glass as half full but somedays.......

I truly hope Benepali works/ed for you.

Once diagnosed with a degenerative disease, you slowly accept that you will never return to your pre-diagnosed form but are extremely thankful for the good days.

BTW, was informed by my dermatologist that Enbrel costs £716 per four injections where as Benepali is £656 per four injections. £60 per month difference.

[Katiedid53]

I have been switched to Benepali from several years doing well on Enbrel. Prior to my first injection, I had to have a small operation on my ear so I had to leave off injections for 2 weeks before and 2 weeks after the op. By the time I came to take an injection, it happened to be my first Benepali, and I was really in need of help! Within hours, I felt the worst joint calming down. I was thrilled to bits that it was apparently working so well and so quickly. I was also relieved because a new drug, however 'similar' is not the same. However, within 48 hours, I developed an awful chesty cough. It totally knocked me over. I saw my Gp and they thought it was nasty enough to have a chest XRay, sputum sample sent off and blood tests. Meanwhile, I was back home coughing, feeling dreadful and not knowing what to do. I returned to the GP days later to see if they could maybe give me precautionary antibiotics in case there was an infection. I had Doxycycline and after an initial improvement, the cough continued but not so bad. Two weeks later, my joints hurt so much and with advice to continue with Benepali 48 hours after my last antibiotic, I had another injection. 48 hours later, the cough returned with a vengeance and my joints flared. The consultant says the cough is coincidence and the flare is secondary to that. He has asked my GP to review me again. They have the results and XRay etc were all normal and the bloods show no evidence of infection. I feel like I am being batted back and forth between GP and Rheumatology. In despair yesterday, I rang Rheumatology and said that until I see my consultant, I am treating myself with 5 mg daily of Prednisolone. That is already helping considerably. I am still coughing and wheezing and am very wary of having any Benepali. Any ideas?

[Hostahousey]

I changed from Enbrel to Benepali after 8yrs with the only side effect being nasal . I have been using Benepali for about 7 months, but now whether it's my imagination I wonder if Benepali is causing some funny symptom's . Ian now experiencing leg aches, shooting stabbing pains right up to my thigh. When on a short walk I feel as though I need to force my legs to move. I wondered if anyone else had experienced any of these problems.

[kirovfan in reply to Hostahousey]

Hi, I started with a pain in my left calf just below the knee when my leg was in a certain position but did not associate it with Benepali until I switched back to Enbrel and it disappeared however night cramps started again when back on Enbrel, hadn't had one whilst on Benepali. Everything seems to be a trade off, will be interesting when I next go for mobility measurements to see if they have gone back to pre-Benepali days.

[Deminem]

Hi all!

I have been on Enbrel for 4 years almost for AS, it's worked the best in comparison to non biologic meds.

I was informed via letter that I would be switched to Benipali from Enbrel, around the same time frame others have stated, no choice given. Since the switch I have had major fatigue return, and stuffy nose, which brings on daily sinus headaches, and one time a 12 hour migraine. I want to ask my Rhumy doc to change back, has anyone done this with success in the UK? Since starting the Benipali doing everyday standard stuff has become a struggle, and I really don't think it's me having an expectation that Benepali would be inferior to Enbrel as I've only just started to connect the dots several months after starting Benipali(btw, who signed off on such a micky mouse name)I gave it a fair shot as I'm all for saving the NHS money, but I just can't function properly since the switch.

Has anyone else had sinus headaches? I can see fatigue has featured a lot.

[Katiedid53 in reply to Deminem]

I have RA and have been switched back to Enbrel. I didn't get on with Benepali. I have had 2 months of messing about with nasty side effects and being ignored then being told to keep taking the Benepali. My GP tried very hard to tell the hospital department of her concerns but even she met a lot of resistance. Finally, (when I would have finished taking the last Benepali injection anyway and would have needed more!) the flood gates opened and I have since been told that my experiences were unacceptable and will not be happening again. Unfortunately, whether or not due to the interruption with Benepali, my joints have since flared, even with the Enbrel and I have had to see my consultant and have extensive tests today. I have been given a general steroid injection and it is hoped this may 'kickstart' my response to Enbrel again. I would be grateful to hear any other experiences and more importantly for me, if anyone else has had their response to Enbrel altered?

[Deminem in reply to Katiedid53]

Hia Katie,

Sorry to hear you have been flaring and having to re start tests, that really sucks!

I had flares all over my body during my 6 months on Bene. My jaw, back, chest, fingers, you get the picture.

After starting back on Enbrel(had 3 shots/3 weeks now)My flare symptoms have all died down and are back to normal. No more headaches and I have more energy again. I know this doesn't mirror your experience, so probably no help there.

Did you change any thing else during this time, meds or otherwise?

How long have you been back on Enbrel again?

D

[kirovfan]

Like so many of you above Benepali did network for me. After complaining to my team I had to go see my rheumy and every one of the mobility measurements were worse in just 2 months. That couple with the pains returning by mid week I was switched back and haven't had pain since! Similar is NOT the same but there are side effects with Enbrel too, my nasal passages are blocked every day when I wake up but clear after 15 - 20 minutes on my feet, I had leg cramps again (none on Benepali) but small price to pay in my opinion. Suggest you keep on going back to your teams and asking for re-evaluation. Good luck!

[kirovfan in reply to kirovfan]

sorry did "nothing for me" - spell checker again, usually it is Bengali instead of Benepali grrr

[Deminem in reply to kirovfan]

Kirovfan thanks for sharing your experience.

I have got a smashing rheumy team and they have been quick off the mark with help. Had a call back from them within a couple of hours saying they will fast track me an apmnt to reassess my situ. That was yesterday, today another call saying I may not even need to go in to see Doc, they have stopped my Bene script and are going to get a Doc to rubber stamp my switch back to Enbrel. They are the best, and second to none and are really on they're A game.

In meantime my Bene injection day is today, yikes! I can't bring myself to take it, even though they advised me to bcz there isn't a lead time for Enbrel restart. They said Bene must be doing something. It sure is I know this much...now I'm having cold symptoms, mild cough. dry throat, runny and blocked nose stopping me sleeping, and an occasional involuntary head twitch, help lol!

I know I'm playing Russian roulette with my ASS(AS) by not taking my meds, bit scared if I'm honest :/ as I've been quite well on Enbrel for 3 and a half years, feeling so sh!ty has come as a shock, though it was a slow drip drip effect getting to this point.

Am I doing the right thing stopping Bene? What do you all think?

Rheumy nurse offered me some jab in our phone chat, said it was an emergency med beginning with the letter D I didn't catch the full name though. I said no thanks bcz I'd never heard of it and right about now I'm sick of being a guinea pig with Bene. Has anyone any clue what this jabs name is?

Cheers guys!

D

[Gnarli in reply to Deminem]

Was it depo medrone? If so, it's a long lasting steroid with added painkiller lidocaine apparently. I haven't had it but many here have and say it's been a godsend.

J

[Deminem in reply to Gnarli]

You know what J it probably was that. Cor your good you!

Thanks for heads up!

Do you think I should take Bene, what say you? I mean i won't die if I don't lol, I'm just in a spin and not able to make choices when my brains all headachey just lately!

D

[Gnarli in reply to Deminem]

Oh blimey! You're asking someone who can't make a decision with a full kit and instructions. I'm not on biologics of any sort - yet - so really could not judge the relative merits of either. My knowledge is very much second hand. I'd be guided by my rheumy team and maybe a call to the help line. I'm sorry if that sounds a cop-out but I'm really not qualified to advise. Hugs

Jan

[Deminem in reply to Gnarli]

No not a cop out at all, I did put you on the spot rather...sorry babes

Other half just got home, says "you should take it" Rheumy said same so guess I'll go with my tail between my legs and take it, hehe!

D

[kirovfan]

So glad they are switching you back! My team is great too and I can't praise them enough. With all the feedback they are getting - I know I was't the first in my area to complain - it may not be long before they stop moving people on to Benepali if they have already been on Enbrel. I have no idea what the D injection is but my switch was very quick, only slowed because I was on holiday in France at the time but even then they kept me informed and the day after I returned my Enbrel was delivered. Go Wakefield team!!!

[Gnarli in reply to kirovfan]

Yay, Wakefield!

[Hidden]

i was changed from embrel to benepali 1 month ago more aches and pains mouth sores sore throat sweating feeling very run down will be making appointment to see if i can go back to embrel seems like ive gone back 5 years, so much for saving money now i cant work so losing money, Good luck anyone going on benepali.

[Furle in reply to Hidden]

Hi, just asking if you have been changed back to Enberel ? I have only had 2 injections of Benepali after being in remission on Enberel and I am now back to pre Enberel state.

[RayC1]

I have been on Benepali for two months after taking Enbrel for four years. I have JIA and was diagnosed 33 years ago so I have pretty much tried most meds. The Enbrel dramatically decreased all of my symptoms so much so that I have taken up bodybuilding. However since starting the Benepali, my JIA symptoms have worsened. I thought that maybe my chronic runny nose/sniffly cold had triggered an immune response but reading some of the comments below, it seems that this could be attributed to the Benepali. Any thoughts on this? I will contact the rhematologists to update them but it is worrying...

[Deminem in reply to RayC1]

For me I'm certain the runny and sometimes blocked nose is a side effect of Bene. It's gone again now I'm back on Enbrel. Started after 3 month of Bene and continued till I stopped at the 6 month mark.

D

[RayC1 in reply to Deminem]

Thanks for the feedback. Have put in a call to the hospital so am waiting to hear.

How do you feel back on Enbrel? Have all your ASS symptoms subsided?

[Deminem in reply to RayC1]

Hia RayC1,

Good girl, glad you called it in.

I'm doing a lot lot better. Only just had my 2nd Enbrel shot but already the fatigue has let up. No more headaches, or 5 hot flushes a day, down to 1 if that a day. My ears have stopped popping fluid sound, less aches, ect.

Starting to feel the cloud lifting.

Hope you can get your situ sorted soon.

D

[sleekreek]

I have been diagonised with AS and it seems my pain is getting worse..i feed on pain killers and i heard those are not good for ur liver on the long run........ TBH i have not been consistent with benapali...i just want to know how u guys manage ur pain....my neck pain is terrible....i really need help pls cos it makes me suicidal sometimes..my wife just found out about this as i do not feel comfortable talking about my condition to anyone.

I just want someone going thru d same pain to reach out to me and let me know how they manage their pain,,

[ITYFIALMCTT in reply to sleekreek]

sleekreek This is buried in a comment thread and I wonder if you might get more responses if you make your own separate post so that more people might see it and respond to you?

[sappy]

Hi All

I had been on Enbrel for about 18 months for AS when informed I would be changing to Benepali. I went with it as I am all for saving the NHS money but now 8 weeks in i have almost gone back to my pre biologic state both pain wise and feel much worse than I have ever been fatigue wise. I seem to struggle to get going with anything and feel permanently wiped out and exhausted. I have tried to battle through it but then feel even worse with awful headaches etc.. on top.

My Rheumy also gave me the depo medrone injection and started me on Sulfrasalazine around the same time as I had been having issues with my hands feet and hips being very painful and stiff.

I really don’t know what is down to what and I fear I may be heading in a downward spiral as the fatigue has knocked me to the extent that I have been signed off work and still feel no better several weeks in. This is not like me at all to be off like this, only when AS first reared it’s head have I felt as unwell as I do now.

My GP seems to think it’s reasonable to take whatever time off work necessary to get back to feeling well again. He seems totally governed by the rheumy. He’s very supportive but I just want to get back on track not be left struggling.

I spoke to the Sulfra nurse and she was of no use at all. She just ignored my questions and said to stay with it all until I see the consultant in Jan.

I don’t know what to do for the best? Could all this be the change to a biosimilar or side effects of the Sulfra or am I just having a massive flare which is lasting weeks??

Any advice gratefully received

Take care

Lisa

[Norm47]

Hi, I'm 70 years old (suffered with RA for 38 years). I have been on Enbrel for 12 years and life has been fantastic. I felt so lucky to be given this drug and had been pain free with no side effects at all throughout the duration of being on the drug. I switched to Benepali 4-5 months ago (the usual letter from the hospital informed me I was switching to Benepali but assured me it was the same drug and you won't notice any difference etc). Since Christmas I have felt the drug not working as good as the Enbrel. Pains in most joints have returned together with severe nasal congestion and fatigue. I will be going back to my Rhumatologist and asking to go back to Enbrel after reading the replies from other people on here. It is definitely not as good.

[helenlw7]

I changed from Enbrel (10+ years) last week after the usual letter from the hospital. Did my first Benepali injection a week ago. For the last 3 days I have been feeling really rough - achy joints, stiff joints and that dreadful fatigue! I have a review of meds with rheumatologist in July but I’m not sure I can wait that long!

[Jane656565]

I changed from Enbrel (9 years) to Benapali and didn't give it a thought. After about 4 weeks I started to feel unwell, increase in fatigue headaches and sinus issues. I was asked to come off for two weeks to be certain and those effects went but then I had the panic of a joint flare up - I've now been transferred back to enbrel but am awaiting delivery so have re taken benapali in the mean time due to the fear of a flare up ( the lesser of 2 evils)

I now have increased post nasal drip dry cough and have lost my voice for the first time ever so am off work (I teach!)

Hopefully my delivery will come soon and I'll be back to my pre benapali normal

The only good thing is that this problem has brought me to this site. I do suffer from some headaches and nasal problems on enbrel but had never connected those to entracept until I found this site