Hi all. I have just seen the rheumy team who have advised they are switching my son from embrol to benapali. I'm feeling rather concerned as after a bad start with methotrexate he has now been on the embrol for about 2 years and it's worked really well with only a couple of flares. My worries are side effects. Can anyone advise if they are on it and if they've had any side effects please. Thank you. I quizzed the nurse over and over and she just said it was cheaper and it was like buying a branded brufen and going to the supermarket and buying there's.
Benapali: Hi all. I have just seen the rheumy team who... - NRAS
Benapali
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sassierbint
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I have been on Benepali for 4 weeks now, which is early days. I was allergic to leflunomide and sulphalazine. I had to stop methotrexate as it affected my liver so was also nervous starting Benepali. I’m 2 years from diagnosis and still haven’t found the right meds’ to get it under control however So far so good and no side effects but like I said early days yet. I was told the same as you about it that it is just a cheaper version as in the Brufen scenario you mentioned.
Hope he gets on ok with it which I’m sure he will. Good luck x
Thank you Tracey. Extremely nervous as the methotrexate made him violently sick lethargic and glassy eyed. Don't want to go back to you in the air like it was when he was on it. Hope you go okay in it and it works as it should. I have my fingers crossed for you. X
I would be interested in this as I'm about to start benepali too.
Want to get off methotrexate as it causes nausea for a couple of days following it. It takes out 2 days of my week.
in reply to Matilda_1922
Me too. I take it Saturdays. So Sunday is not so great either. I get nauscious Saturday and sometimes Sunday and Monday. My vision gets blurry and I can't remember simple things. I work Monday thru Friday. Needless to say, I don't look forward to weekends.
Seems that are giving very little away at the moment. Hopefully we can all keep each other updated on progress. X
Hia
There is a ton of stuff on this subject from others, me included on this site's database. Just type Enbrel and Benepali into the site search box top right of this page.
D
Thank you. X
No probs hun!
Comeback to us here with what you think once you've read some posts.
Or if you have any more questions fire away.
D
Hi
I guess you are your sons carer and you have to make decisions for him?
If so and that was me I would say no. The nurse has given you a bland sales pitch similar to that put forward by the drug companies.
The Trust cannot compel your son to switch for anything other than clinical reasons and the Consultant has to see your son and carers. The financial argument and the identical outcome argument are both flawed. These drugs are only similar and not the same.
The NHS guarantee to patients as a legal duty that there is 'no decision about me without me' .
Claire from NRAS charity posted this fact just last week. She also advises to patients being forced to switch to not consent.
There is a big difference between being in remission and switching, like your son, from a new patient starting on a biosimilar.
As you have already been advised by Denimem look up all the posts. It is good advice.
Also look at the video Biologics/Biosimilar NRAS website when Alisa interviews the doctor who is a consultant to multi drug companies on the truth about something called 'the gain share' and who really gets the money that is saved. It appears it is being shared between the CCG's and the hospital trusts. Not direct, or knowingly, to rheumatoid patients which I had, wrongly, been told by a nurse.
Back to your son ..... it is important he keeps in remission. For him and for his family. The knock on effect of parental care of a flared child with rheumatoid is unthinkable for £60 a month saved by not sure who.
If it was me I would not consent to anyone wanting to risk my child's health and would ask for clinical reasons, only, in writing, from the Consultant asap.
Your son, you and your family should not be put in this position. I am appalled that children and young people are being treated like this by this switching programme I just thought they were targeting the older folks.
It is shameful of all those involved.
Please keep in touch. I hope the NRAS, who support the switching programme, will read your post.
I truly wish you well.
BG
Thank you for the reply. I will be getting in touch with them first thing Monday morning. Reading some of the posts it's quite alarming of the potential knock on effect. We really don't need to be back where we were. He still has a lot of association with the sickness from the methotrexate so not prepared to be back there. There are certain foods he won't eat and the clothes he wore when he was Ill he wouldn't put back on. Thank you for your post all help is greatly appreciated. X
Erm, sorry, but are you saying that it’s ok to “ target the older folks” then?
I think if so , I take offence as such a statement.
Also I’d be careful of how some choose to interpret “ there’s no decision about me, without me” - surely what this means is that as a patient, you’re involved in decision making? Ultimately the medical professional will make the decision in ones best interest?
I’ll be very clear, I am not condoning any switch for solely financial / budgeting reasons but I would exercise caution in promoting that this switch is an automatic dis service per se- there are lots of people who are no difference and continue to manage their RA as before?
Marie
Hi Marie
I don't know why but when I saw the original post it had not crossed my mind before that young people and children with JIA would come under the blanket approach to switching. I learnt something new today.
The quote used by me and others comes, I believe, from Appendix 1:Section 13Q legal duties of National Health Service Act 2006 which gives a statutory duty to patients.
There is also a section on NICE 'Guidance development process. '
I hope this may help provide information .....
nice.org.uk/About/What-we-d...
It may be that I have misunderstood or perhaps there is newer guidance. If that is the case I would be glad to see it. I will phone the help desk next week and see if they can help to clarify.
It is good we have access to so much information but I guess it can be interpreted in different ways.
Personally I am always pleased when drug treatments work for those of us with RD ..... whatever they are. Like others I would have swallowed or taken anything to get the pain to stop. At each DMARD treatment I was given a full explanation of what I was taking and why and what to expect. Like everyone else I had to consent and take it until it either worked or not as the case may be. I really wish a change from Biologics to biosimilars, because biologics were failing, was clinically handled in the same way.
I am grateful that so many in HU have shared their good and bad experiences on HU as I would have felt very isolated. Thankfully this is a place for all of us to share experiences good and bad and help us with the difficult decisions we have to make.
Best wishes BG
I got in touch with them and the nurse was extremely rude. She basically said I'm not giving you an option your being advised it's happening. If we were under the doctors for prescriptions she advised me they would just change it and we wouldn't be any the wiser. She said they were trying to help the patients by letting them know. I asked for an appointment with the specialist to which she replied I've called and it's me dealing with it. At the end of the conversation she said she would ring my son which she did. He said the same to her and she was also very rude with him. She has allegedly asked for an appointment but no phone as yet to say one had been arranged. I will be writing a letter to the specialist I think airing my concerns, her rudeness and lack of empathy towards hearing us out. 😒
Quick reply.
This should not be happening. I am appalled and really upset that you were both spoken to and treated in this way by a NHS nurse or anyone who has been medically trained. To be rude to a young person is truly terrible. He is unwell.
As you know PALS is the hospital way to make a formal complaint about the nurse and the arbitrary medical decision about your sons treatment and care plus a letter to the consultant is also a way forward for you to ask for his/her written clinical reasons for arbitrally changing medication for your son. Then when you have their written reasons you can appeal or at least discuss this properly. Consultants have to make the decision not a nurse or PALS or, as I have formally found out, not the local clinical commissioning group.
Your sons story has really moved me. I just did not think they would treat children and young people like this. Have you contacted NRAS helpline?
BG
I haven't contacted anyone as yet. I think we are still reeling from trying to discuss the medication change. I had made it clear to the nurse that we didn't wish to go ahead yet she still contacted the pharmacy and told them to deliver the medication out. I explained to the lady at the chemist that she needed to hang fire on sending anything out as he didn't consent to the change. She was very understanding and was also appalled at how we had been spoken too. The nurses words on the phone were we didn't bring you in to get your consent we did it to be polite and not just change it as your consent isn't needed. The lady at the chemist has also advised I put a complaint in. There really is no need for people to be so rude. I think maybe she hoped I would accept the delivery and then it would make it harder for me to appeal. My son tried to explain to her he didn't want it and wasn't prepared to miss any more of his education through bad choices of medication and her reply was well if you don't take it you will be missing out and not getting in anyway. 😏
Not surprised you are reeling. Normal reaction to abnormal behaviour. How disgusting. I have had similar treatment at the hands of a specialist nurse who, when I asked who had made the decision about me, said it was everyone else's fault. i am still on the road to finding out who and when.
My personal view is that your son's nurse has behaved unprofessionally and dangerously and needs to be retrained and possibly disciplined for speaking to you both in the way she did and for how she Is treating your son by dismissing concerns and just changing the medication as if the patient does not have a voice or matters.
I would be surprised if she is working within her designated authority and has obviously never heard or been trained to remember the NHS mantra of ' no decisions about me without me '?
A mantra that NRAS have recently reminded all on the site about and have said they still support.
To threaten your sons education. I have never heard anything like it!
He must be a very strong young man and you must be proud of him. Well done for standing up to being bullied.
Who has empowered her to speak to you and a young person like that? Is it the consultant? the CCG? the Trust? Politicians? or the drug companies? Whoever it is shame on them.
It may be a good idea to email PALS at the hospital to ask for a meeting with the consultant and to log formally a complaint and what has happened and been said. Also to ask for medication not to be changed until the complaint and appeal have been settled. May be a time to start putting everything in writing. PALS Are there to sort out these sort of problems and it could be a way forward.
Sorry if I am repeating myself.
I hope you get your strength back soon and are able to plan a way forward. You are not alone. I feel so upset for you all. To target any group of sick people in this way is unacceptable but to treat young people so badly is truly appalling.
Please let us all know how it goes.
Wishing you and your son and family well and thinking of you lots.
BG
Good Morning BG. Thank you for you words. I yesterday had a call from the chemist who delivers his medicine to say she had a prescription for my son's etanercept. I rang and spoke to the young lady and asked how this was so. She advised me she had fired an email over to the consultants and had advised of our conversation a few weeks ago on the phone. She had mentioned everything from my son's fears to the rudeness of the nurse. She had kindly also asked that the nurses be spoken too and if need be trained on delivering suck information. She said as well as the patient being upset about unknown medications and untrusting of them they also have to bear in mind she is the one that has to ring these people and book for the new medication to go out. She has advised the specialist consultant that although this case was more severe as to how the mother and child had been spoken too unfortunately she was getting more complaints about the nurses being rude when she was ringing for delivery. So for now we are safe and I will get a letter composed and sent into PALS. Thank you all that have commented and given great advice in what was a very hard time for my son. Thank you
SB
Dear SB
What fantastic news. Thank you for updating us.
Well done to your pharmacist for saying no and reporting your conversation. It shows a level of humanity and professionalism that many professionals involved in this programme and process are just not showing.
At the end of the day it is only the consultant that can change a prescription for medication like DMARDS and Biologics to another form or similar and then only after clinical assessment and patient agreement.
I think it may be just as wrong for a rheumatology nurse or Hospital to order that any patient on MTX or other DMARD was being forcibly changed to something similar without first having a clinical consultation with the patient and a consultant or safety data or appraisals.
I am still having trouble processing the way your son has been treated and spoken to. Well done for remaining so resolute and strong ..... all of you.
PALS is a good next step, Their job is to sort out problems before the situation or complaint causes anymore harm to a patient or their family.
Thinking of u all. Thank you for keeping in touch.
BG
Sorry for the late reply. I would just like to thank you all for your words and advice. They have given me the courage to use my voice and speak out. Without you all I probably wouldn't have done it and stuck to my guns. Thank you.
SB
Well done to you for being so strong and focussed. Hope all goes well for you all and your son’s education too.
All the best
BG
I can understand his fear of foods and associations and feel sure lots of folks on this site can identify with what you say. I still can't eat certain foods and only drink water or tea! Even photos of events bring back memories of bad smells or food which make me feel nauseous still!
Would like to suggest you put in writing to the Consultant that you do not consent. The consultant has the ultimate responsibility for clinical decisions about your son and has to examine and talk to him and his carers. The doctor also has to take into account family circumstances.
As a parent it must be terrible seeing your child ill with RD and then see them suffer with the DMARDS and then to be given remission and a chance of life and hope with Enbrel or another biologic for a person or persons thento make a decision that may threaten that remission.
That is not what the NHS trains doctors for. They are trained to make people, children, well and alleviate suffering. Not to take unnecessary risks with our health. That's what drug trials are for.
Thinking of you and your family lots. Hope to hear some good news for your son and you all.
Best wishes
BG
I have been on Benepali for about a year now and it is working really well for me, taking me from not being able to walk without crutches to walking but my ankle is hot and sore. Massive improvements.
It is almost miraculous when you see such improvements with these very special drugs. My story is similar. I now have a life back.
All the best to you
BG
You say you've been on Benepali for a year, can I just ask how long it took before you noticed any benefit from it ? I've taken 11 injections now and don't feel any different. I walk with crutches around the house and use a wheelchair when out, I was reluctant to start on this drug but my nurse said she would hope to see an improvement and be without the crutches.
Felt I had to just send a quick reply to your question....am also one that has had to give up on other meds for reasons, cons was completely honest with me about benepali....even telling me it was cheaper than its sister drug, and as I trust him a lot, I had no pronbs going with it....1 yr later doing fine....
Good luck
That's brilliant news Carter. 😊
Really very pleased to hear your story. I went straight from DMARDS, MTX etc to Biologics and have had the same experience which I want to hang on to for as long as possible. I think remission from RD Is what we all want whatever we choose to take.
All the best
BG
I agree. Remission is the way forward for everyone.
Hi
Been on Benepali now one year almost. Very few side effects - itch, bit of fatigue and that's about it. It has significantly helped my mobility and reduced inflammation and pain. Best med for me so far.
Hope your son gets on well with it too
Thank you. It's so good to hear that people are doing great on it. 😊
My son was on Enbrel for a couple of years and as with your son it worked well for him with only a few flare ups. InJuly he was switched from Enbrel to Benepali and we was told that it was the same as Enbrel. Unfortunatley after only a few weeks on Benepali my son said that his fatigue has started to come back and he felt tired all the time. Gradually all his joints have become swollen and painful and it became so bad that he was unable to go to college or to his part time job. I contacted his rheumy nurse who said that we had to go to see her which we did and she agreed that Benepali was not working for him and she would talk to the consultant about him going back to Enbrel..She also said that there was a Benepali committee and that his case would have to be put to them as they have the final say if he can switch back! It took a couple of weeks for them to say he could go back to Enbrel but I am still waiting for a phone call to arrange a delilvery of it. In the meantime my son has had to have a steroid injection to try to get his flare under control.
In my opinion he should never have been switched to Benepali when his JIA was under control. Benepali may be similar to Enbrel but clearly it is not the same. Also it should not be so difficult to get back to Enbrel if Benepali does not work. This has caused so much stress for us it cannot be worth the money it saves.
I hope Benepali works for your son though.
Oh no that's so sad to hear. I'm going to ring tomorrow and tell them we're not happy to go on it and want a consultation. I hope your son gets sorted soon.
I have spoken with the nurse today at rheumatology who has advised me in so many words that we don't have a choice and that unlike doctors they have been respectful enough to consult with patients. I asked for a meeting with the consultant. She advised me she would speak with them and then make contact with my son. I explained he didn't want to go ahead and wasn't consenting to the change. She reminded me it wasn't a consultation for us to decline it was to make us aware it was happening. I have just received a phone call from the pharmacy saying they have been advised to deliver the new drug. I asked them to put it on hold until I get answers. The pharmacist was as appalled as I am with the nurse who is dealing with this. My boy is now refusing his treatment. What a conundrum we are in.
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