Does anyone have any experience of requesting a chang... - NRAS

NRAS
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Does anyone have any experience of requesting a change back from Benepali to Enbrel?

Condessa2001
Condessa2001

My RA was classified as being in remission when I was using Enbrel with Lefulnomide but having been switched over to Benepali around 2 years ago I have found my disease returning to how it was when it originally started (pain in feet, knees, hands). I told my rheumatologist at least a year ago that I wasn't finding it effective and he told me that I "must be the only person on the planet who thought that". He looked at my bloods and said that they were fine and that I was still in remission. I'm not. He said the same 6 months ago, I said that had aches and pains but the letter to my GP still stated that I was in remission. I went to my GP as I was in pain but she just repeated that my bloods were fine and so therefore she couldn't do anything. My last blood test showed a raised ESR of 27 which still isn't high but I find myself virtually unable to use my right hand due to severe wrist pain, along with pain in my thumb and index finger. The heat coming off my wrist is amazing. My knee is painful but not full of fluid as it used to be pre-Enbrel days. I find the Benepali injections much easier that Enbrel but ideally I'd like to switch back to a Enbrel to see if I can get my disease back under control again and get in with my life. Has anyone had any success in doing so?

13 Replies
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Hi Condessa2001..

Hope that you are OK??

I was on Enbrel like you.. which worked very well for me, then I was switched to Benepali which was supposed to have the same ingredients if you like.. I was OK for a short time, then it stopped working.. that was about last Nov I think 🤔.."so when you next see your rheumatology consultant you can tell him that you have found somebody else on the planet same as you... "

Anyway my health professionals then wanted me to try Rituximab (intravenous infusion) which I really didn't want to do. .. Lots of personal reasons.. Anyway I asked if I could go back onto Enbrel as it worked for me first time around,they allowed me to go back on Enbrel I have now been taken off Enbrel as last Friday as it has unfortunately stopped working for me 😢I was on it for just about six months.. I hope that you can go back on it and that it works well for you 😍 I have now got a choice of either Tocilizumab (subcutaneous) or Tofacitinib (tablet) my head is screwed at the moment talk about brain fog...

Anyway I do hope that all goes well for you and that you get some relief from your pain

X

Crystal197
Crystal197 in reply to PinkLamb

Hello this is exactly what happened to me. I’m now going to start Tocilizumab. Hoping this works like Enbral as I had this for approximately 10 years.

PinkLamb
PinkLamb in reply to Crystal197

Morning Crystal197

Thank you for your message...

When do you start Tocilizumab??

And are you injecting with the syringe or the pen?? If I decide to go onto Tocilizumab I would much prefer the syringe, I dread using the pens, I find them far too difficult for patients with our condition to do themselves with the pain/swelling/lack of grip and misshaped joints... when you have to stretch your skin.. My husband has had to do them for me.... I can't

Was you given a choice of therapies?? Or just this one??

That's my dilema you see I was told that I might be able to try Tofacitinib as well... I have been looking at the side effects for both and the pros and cons if you like?? I just don't know what to do 🤔🤔I have been given an appointment with my RA nurse in about three weeks time to go through both of the these therapies and then make a decision !!!!! 😥

I really hope that Tocilizumab works well for you 😊

And wish you all the very best...

Keep me posted on how things go with you...

Best wishes

Pinklamb x

Crystal197
Crystal197 in reply to PinkLamb

Hello Pinklamb I have not been given an option between pen or syringe. I agree with you I prefer syringe too. I may ask to switch to the syringe. I had 2 choices Baricitinib or Tocilizumab. I did not know which one to go for. 🤔 I have found it difficult to choose. Then I went along with the drug that has been on market for time. If this is not the correct choice and does not work , I will then need to try another one. I have been in pain since Aug 2019 , since switch from Enbral to Benapali , then back to Enbral. My life style since then has changed so much that I feel like that I’m loosing mobability as I’m in pain. Finger crossed Tocilizumab works for me. For sure I will let you know if Tocilizumab works. Best of luck in your treatment.

PinkLamb
PinkLamb in reply to Crystal197

Thank you... Same to you too...

X

Hi FurBaby1

Thanks for replying. I finally managed to speak to a rheumatology nurse last week and she told me that I would be unable to switch back to Enbrel as they could only gave been done in the first three months of the switch to Benepali. I questioned why I was never told this and she didn't respond the fact is that I was ok for the first 6 months after the switch but gradually noticed the changes after that. She said that if I wanted to change from Benepali then I would have to switch to another medication which I said was ludicrous give Enbrel had worked so well. I am seeing the rheumatologist next week but will get absolutely nowhere with him. Why can't these people listen to us.

Hope you resolved your mess issue. x

Good morning Condessa2001,

Hope that you are feeling well today...

I switched back to Enbrel after Benepali stopped working and was on Benepali longer than any three months so that's strange... I am now off Enbrel for two weeks.. I Had my appointment yesterday with rheumy nurse to decide what next therapy to try and have decided to give Tofacitinib a go!!!!!the nurse said that she has got quite a few patients on it and they seem to be doing well!!!!!!

In a way I wished that I hadn't have gone back onto Enbrel and feel that I have wasted six months and that was mainly in more pain than not....that was my decision to switch back... my consultant didn't really want me to switch back... Too late to say that now, but I wouldn't advise anyone to go back as it never works second time around and that's why consultant's don't patients to take a step back!!!!!

I now have to wait to get my new meds.. Hopefully I won't have to wait toooooo long we will see.

I hope that you have a constructive appointment with your consultant next week and get sorted with your medication..

X

I was on Embrel with brilliant results for ten years, but four and half years ago I had a flare and despite my pleading the Consultant not to he took me off Embrel.

Since then my life has been on hold - tried Rituxumab and then Tocilzumab - both of which did not help at all. In the meantime my hands have deteriorated to such an extent I am hardly able to use them and am practically unable to walk due to backspin and weakness in legs.. I am now on Baricitinib which is not helping.

Each time I see the consultant or Rhuemi Nurse I ask about going back to Embrel, but they refuse to even discuss it and say once one has 'failed' on a biologic you cannot go back. I have offered to pay for titbit still no luck.

I do not know where to go from here.

Oh Condessa2001 how pleased was I to read your post. I am in exactly the same position as you. Although a year ago my consultant a actually agreed that my disease was active again. But a year later I am no further forward, still on Benepali and struggling, he wants to put me on a totally different drug and ignores me when I mention Enbrel. I am still fighting though.

Hi fossil321

Thanks for replying. I finally managed to speak to a rheumatology nurse last week and she told me that I would be unable to switch back to Enbrel as thatcould only be done in the first three months of the switch to Benepali. I questioned why I was never told this and she didn't respond. I was ok for the first 6 months after the switch but gradually noticed the changes after that. She said that if I wanted to change from Benepali then I would have to switch to another medication which I said was ludicrous give Enbrel had worked so well. I am seeing the rheumatologist next week but will get absolutely nowhere with him. Why can't these people listen to us.

I suspect that's why they won't switch you back too. Good luck with the battle and do let me know how you get on. x

Thank you for your reply. I am due to see someone in December to try and find out what is going on. I have asked whether I can change consultant.

Hi, Same as you, 15 great years on Enbrel but agreed to switch to Benepali. I lasted 14 weeks before giving in and requesting to go back on enbrel. My consultant reluctantly agreed and I tried it for 9 months but never had the benefits that I'd had previously. I'm trying rituximab now (last infusion in July). Problem is , between coming off Enbrel and now I've had significant joint damage from the RA and secondary osteoarthritis which isn't likely to be improved by rituximab.

Trying to decide between having another infusion in Jan 2020 or getting a new knee!

You can go back, keep pushing and I hope it works for you but it may have just lost its effectiveness.

My experience was very similar. Rituximab didn’t work after failing with Benepali. I am now on Baricitinib which I’m delighted to say is working...for now at least. However my hands, feet, knees and hips are worse than pre Enbrel days.

I have to say that my consultant has been brilliant throughout the ten years since diagnosis. Both he and my Rheumy nurse have been wonderful. It’s just the wretched disease that sucks! So many people seem to have constant battles with their healthcare professionals. I feel very fortunate and my heart goes out to all of you who seem to have to fight for what they know they need.

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