I had been on Enbrel for about 18 months for AS ( Ankylosing Spondylitis ) when I was 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 the main AS symptoms Enbrel worked so well to keep in check have returned and i 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 try to battle through it but then feel even worse with awful headaches as well as everything else.
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 for a while and it was thought that the AS may be getting worse by affecting peripheral joints.
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 about it but my questions weren’t really answered and I was advised 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 up which is lasting weeks??
Any advice gratefully received
Take care
Lisa
Written by
sappy
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You poor thing. Trouble is, when two different drugs are added at the same time, it's hard to know which is causing the issue. Can't help with the bio drug, but I do know sulfasalazine can be problematic for some folks. I had an awful time on it, and had to stop.
Could you perhaps talk to doc and ask to withdraw one drug to see what happens? It's terrible that you should be left in such a state.
I’ve been told I’m going to change from enbrel to benepali in the near future and I’m very concerned about it. Enbrel took me into remission within weeks four years ago, I don’t need any pain relief at all.
I’ve done two threads on here which you might find interesting.
I would think that if you’ve gone back to your pre biological state since changing to the biosimilar it really does point to changing the drug and not adding a new one. x
If you look at the NICE guidelines about changing to a Biosimilar it says it must be discussed with your Rheumy...you should not just be told....end of!
Have you looked up the incidents of side effects after changing?
Hope you can sort out something you feel happy with.
AgedCrone can you tell me where you found the info about NICE guidelines and switching. I’m trying to get as much info I can on the subject. I’ve tried googling it but I can’t found it.
Go on the NICE website & ask "switching to a Biosimilar" ....it was about 6 months ago that I looked, unfortunately I didn't print it out.If I find it again I'll send you the exact site.
I am sorry to hear that, Sappy. I've just posted earlier today in another thread .. Think it's in Paula's about my update on discussion with a rheumatologist yesterday in clinic about me staying on Rituximab and not switching to the biosimilar. She did talk about some biosimilars not having as much efficacy once you are switched from the original product, rather than giving extreme reactions. This is what I fear and why I don't want to swap. I'll try copy it over in a new thread. Not here, it's too long but basically I said I don't have to swap. Paula, I was told yesterday each patient should be reviewed individually and if you are stable on your current med and feel really anxious about swapping then you don't have to. I've done all the research too. X
Hi thanks for the info, I have been on the biosimilar for about 8 weeks now and really struggling. If it’s the same in our area then hopefully they will change me back to enbrel without any issue. I want to stop the Sulfrasalazine anyway cos it’s not helping anything as far as I can work out.
I will ring the anti tnf nurse tomorrow and see if they will simply agree the change straight away. Thanks again for the information really appreciate it. 😊 x
Think that is the right thing to do Sappy. Say you have gone downhill and feel worse which is the very truth and don't want to get any worse and want to see the biologics nurse ASAP. I would think in these cases you can get to see the nurse quickly. I guess it doesn't take long to get the pharmacy to switch back the script to Enbrel once the rheumy has requested it, and you know what to do/how to inject so no nurse appointment needed for that. Hopefully the rheumy will agree this ASAP for you. I think the nurse may want to see you to examine your joints etc. Don't delay and let yourself get worse. I don't know if you have to wait a week or two to flush out as such, from Benepali? I asked this before re swapping back to the original meds if things didn't work well on biosimilar and no one seemed to know? Anyone?
Very interesting the point made the biosimilar not having as much efficacy once you’ve switched from the original. My consultant told me that they have been putting new patients on the biosimilar drug for a while now and they are now changing existing patients over who are on enbrel, I got the impression it was across the board. He did say that they are having good results with benepali, but I’ve read lots of posts from people who’s on benepali saying they are better but still need pain relief......I don’t. I do get the odd pain here and there, it’s short lived and not bad enough to reach for pain relief.
I am very anxious about swapping, haven’t slept well since. It’s there all the time, especially at night, I keep churning things over in my mind. I always say that enbrel gave me my life back, more important it gave Me back to Me.
I’m so, so scared of going back to my pre enbrel days. A lump sat on the sofa hardly able to move due to pain and stiffness. Waking up in the morning and crying because I couldn’t face another day being like it. I knew of all the side effects of the drug, some people are frightened of taking the drug because of them....I was more frightened of the drug not working than any side effect. xx
You're exactly as I was Paula. I was nervous from first opening the standard letter I received a week before my infusion as I thought they were just switching me. After my infusions of Rituximab I went on holiday feeling that anxiety and it's been on my mind all the time and I've not slept well either. I think you must say how it is affecting you. Before Rituximab I was bed bound for three months and through trey movement hurt. I was sleeping 20-22 hours a day and at one point didn't come downstairs for ten days. There are six smooth patches on the stairwell hall anaglypta where I had to bounce off sideways with my back to get downstairs ... It was agony. I know exactly how you felt and you cannot go back to that. Are they aware to the extent you were brought to a standstill? They need to be. I used to cry too when I woke up first thing and laid there with my heart going bonkers scared to get up. When is your next rheumy appointment? xx
Oh Neonkittie you sound worse than what I was I did manage to be able to get up, on the sofa most of the time, but I wasn’t bed bound. Can understand why you was so frightened about changing.
Because I’m in remission I only see the consultant once a year and the nurse specialist once a year. See someone every six months. I’ve got an appointment booked to see the nurse end of April next year. xx
Thank you Paula 😘I think we've all had our housebound horror stories re getting stuck inside and taking root on the sofa .. Argh .. so all are bad and no one's worse as they are all hard to cope with. Yours sounded equally awful. 😢
I'm very glad you are in remission also and long may that continue. 😁 I only see the rheumatologist every six months in review clinic really as we time it to co-incide a month before my infusion is due. You also see a rheumy during the infusion too as they come round to check on you. So it's routine and following NICE guidelines I believe that when you are on the biologics you are seen every four months by a rheumy or nurse specialist. When I was stable on MTX alone, pre anti TNFs/infusions, it was every 6 months. That suited me fine! xx
Paula, Please be in touch with your rheumy nurse well in advance of April's rheumy review and let them know how you feel. Go meet if needed and do it face to face.
Meant to say o don't have need for oral painkillers or anti inflammatories since taking Rituximab but old osteo damage means I have a Fentanyl patch but I feel I could come down and off that soon. xx
Hi Lisa I to have AS so know how u feel I think it could be a bad flare ur having I went through this once ear was 115 for a month .had to go into hosipal for 2 weeks bed rest 500ml steroid drip then was fine .I'm on biologics to been on all them on last 1 .if u feel Engel works for u tell rheaumtoglist u don't want to switch .get gp to check it ear if it's high contact ur specialist NURSE hope this helps amy
I was moved from Enberel to Benepali and it did not work for me at all , it made my symptoms worse so I was moved back on to Enberel after 8 weeks. Hope you are able to go back as well.
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