Anyone had their biologic therapy changed from Benepali to something else?

[Ms-D]

I started Benepali 16 weeks ago and it was great for 9-10 weeks but now pains crept in and its unbearable. Seeing rhuemy on 14th (whoohoo) where im hoping i can get some advice on what to do next. Shes redoing bloods as alt levels have gone up and giving my a steroid shot. If Benepali isnt working whats the next option? Its all so frustrating as i was so happy it was working as i was pain free except for bursitis pain lol. X

[Lolabridge]

I’m sorry Benepali doesn’t seem to be working for you as effectively now. I had the same problem with it . My Rheumy switched me to Rituximab infusions which I have found to be brilliant for me and I’m just about to have my next cycle.

I hope your Rheumy finds the best one for you next and that it gets to work quickly to give you relief.

[Ms-D in reply to Lolabridge]

How do the infusions work and any side effects?

[Lolabridge in reply to Ms-D]

No problems with the Truxima infusions I've had (it's a biosimilar of Rituximab) and no side effects at all that I'm aware of!

The infusion of the drug is into a vein via cannula in the arm or hand. These are done in cycles (two sessions two weeks apart) in the hospital under the supervision of a specialist nurse and take several hours. But they are only done every 6-12 months, depending on the severity of your symptoms.

[oldtimer]

If you look on the treatments pages of the NRAS website, you will find you questions answered in an accurate way. Lots of options now for biological treatments. If you read up on the subject you will be in a better position to discuss what is on offer from your rheumatologist.

[Ms-D in reply to oldtimer]

Thank you so much x

[lucymead]

Hi I had exactly the same problems. I have been without medication except for 1 Steroid injection in February, they wanted to start RTX but Covid arrived. Now my Gastrologist tells them they can not use Rituxima because of the collagenous colitis and they will now have to find an alternative.

I have been on most Rhuemy meds and Benepali did the best but stopped working very quickly and created lots of problems too. Not sure how long I will have to wait for next appointment. I have told them I am in bad flare but heard nothing .

[Ms-D in reply to lucymead]

Im in the middle of a bad flare and no amount of co-codamol or amitriptyline is helping. I hope they find something soon for you. I tried other dmards but side effects were terrible so rheumy stopped them. Benepali was great and took afew weeks to get used to the injectapen but now its stopped working. Not keen on having infusions but fingers xd they find something for me. Ive also got bursitis so dealing with that too. Hope you feel better soon x

[jacbub103]

I changed from Benepali to Tofacitinib ( tablet twice a day) which is easy and have been symptom free for 18 months .x

[Ms-D in reply to jacbub103]

oh wow thats great news. Will let you know what they suggest for me x

[Knit12]

Yes was on Benepali for 10 weeks same as you hands were dreadful. I did a big post on it last week so I won’t go over everything again but saw the consultant last week got steroid injection in my hand best thing ever. It hurt like hell but well worth it as My hand is much better, and I’m moving to Tocilizumab. This is my 6th treatment so hoping this is it

[Ms-D in reply to Knit12]

Wow. Hope you feel better. Are you on meds or infusions?

[mbw159]

Hi i was kn benepali & the same happened to me now my rheumatologist has changed me to amgevita cant tell u if its working or not as Iv only done one injection its every 2 weeks iv heard a lot of good feedback from it so fingers crossed

[Mmrr]

Benepali only worked for around 6 weeks for me, then suddenly just stopped. I was then given Baricitinib with mixed results.

I've had a few drug changes since then and now take prednisilone, leflunomide and toficinitib.

[Ms-D in reply to Mmrr]

Its a tough mix of meds to take to get the right one. Hope you start feeling better soon. Lefluminide gave me chest pains and heart palpitations so was taken off asap. Me and meds dont mix very well lol.

[Pearlgeorge]

I was on enbrel for 10 years with no problems at all then my consultant changed it to benepali I was on it for 18 months I started to get uti s every month ,terrible fatigue my whole body ached I felt awful .My husband wrote to my consultant and asked her to put me back on enbrel and that I'd deteriorated since being on benepali she agreed to put me back on it but didn't believe it was benepali that was making me feel like I did or giving me the uti s I've been back on enbrel 2 months now I've had no more uti s I've got more energy and I feel loads better x

[Ms-D in reply to Pearlgeorge]

Im exhausted with benepali and pains terrible. Hope they change it. Is the injectapen the same? I am glad you switched back. X

[Alberta69 in reply to Pearlgeorge]

I am just about to go back to enbrel after 2 years of knowing benepali wasn't working. My consultant who is normally very good just didn't seem to believe me when I said I had deteriorated over that time. I see him every 4 months.

I last saw him in person in March on the day that Wales went into lock down and whilst he finally agreed that I was in a definite flare/generally not well, he was not willing to change any meds because of the unknown way covid could react.

He has telephoned several times since then and listened whilst I explained that my joints were the worse they had been since I first started on Enbrel 8/9 years earlier and the exhaustion was now completely overwhelming. I had started getting painful rashes on my hands and had days when they were so swollen and painful I couldn't hold a knife or folk.

Then 10 days ago out of the blue he rang and asked did I want to go back on Enbrel or try a new drug. We decided to go back to Enbrel as I knew I didn't have side effects last time but agreed that if its not working by January I can try a completely new drug.

The Enbrel came yesterday, HAH rang to say that the prescription had been marked as urgent as consultant had promised. I will be taking my first dose today.

I came on this site today to check if anyone had a similar experience and it has given me hope to hear it has worked so well again for you.

Enbrel gave me back a quality of life first time around and I'm hoping it will do the same again.

[Hidden in reply to Alberta69]

🤞🤞🤞hope this works.. I wish they wouldn’t try to fix something that isn’t broken

[Alberta69 in reply to Hidden]

Thanks. I'm hoping my fingers will end up uncrossed!! Humour the only thing that's kept me going.

[Ms-D in reply to Alberta69]

Its the only thing we have...humour. I hope the meds help you soon x

[Pearlgeorge in reply to Alberta69]

I was on enbrel for 10 years without any problems at all then I was asked if i would try benepali because it was cheaper I agreed only if i could go back on enbrel if it didnt work on me I was on benepali 18 months and I felt worse than what I did before I went on enbrel I had many infections uti every month.It took for my husband to write to my consultant and tell her how worried he was that I'd deteriorated since I'd been on benepali and could she put me back on enbrel , my consultant rang me when she recieved the letter she wasn't convinced it was the benepali that was causing the infections and the way I was feeling she did put me back on enbrel that was 5months ago I've not had an infection since and I'm feeling much better x

[Moomin8 in reply to Alberta69]

I am impressed by, no jealous of the amount of direct contact you have had from your rheumatologist. I can't email my rheumatologist; I can't have a direct conversation with her. I have a clinical nurse's number which I leave a message on - if I'm lucky, I might get a return call from a very grumpy and dismissive nurse within a week...if not I have to go through the process again.

[Ms-D]

I start Idacio in two weeks so no idea what to expect. I hope it works out for you.

[Hidden in reply to Ms-D]

🤞🤞hope this Ms-D x

[Ms-D in reply to Hidden]

how are you? Any interesting news from school? Ive had one teacher in reception positive. Lots of kids off in all year groups.

[Hidden in reply to Ms-D]

I’m pretty good at the moment.. typically I’m due to start Baricitinib in 2 weeks 🙄but I have to remind myself up until now I have had a really bad year. I’ve had a f2 f physio appointment this week (4 phone ones since July) . He hadn’t realised how much of a problem my ankle and Achilles are. My muscles and tendons are very weak and tight I’m on an elbow crutch at the moment his aim is to get me to walk with a stick. Told him he can rethink that . I want to walk unaided. He just gave me a look and said don’t be disappointed.. we will see 😁 .

Reception class and 3 teachers off due to one of the children having Covid. Friday evening received an email 2 children in my class parents are positive for Covid so will have to wait and see what’s happening there. Other classes have had several children off due to family having Covid. At this rate can see an extended half term.

I’ve not heard of the drug your due to start. I sure hope it works x

[Ms-D in reply to Hidden]

Wow you poor think. I hope the meds work. I was told to discontinue Benepali so for two weeks ive had nothing and the pain is horrendous and its making ne physically exhausted. The new biologic is a biosimilar to Adalimumab. Not sure whats its going to be like or side effects. I was fine with benepali just lots of hair loss. But it stopped working. My rheumy daid not sure what to give me as im sero negative and had no swelling. It annoyed me as i was in pain but felt like she thought im making it all up. Left me feeling awful when i left hospital. On top of that ive got so much pain in the bursa that im struggling to walk let alone sit. Oh well. Im looking forward to half term. Hopefully extended lol.

[Hidden in reply to Ms-D]

Oh things we look forward too. Bursa pain is horrible it really burns then stabs you when you least expect it . It’s hard getting them to believe you. I don’t have pain or only minimal pain. I do get swelling during a bad flare but for me it is mobility the stiffness effects my range of movement. My physio couldn’t understand why I was not in agony as I have so much muscle weakness my ankle joint pushes out sideways and I have no foot flexing at all due to Achilles shrinking .. 🤬 this disease foxes everyone.. ROLL ON HALF TERM. It’s been tough .x

[Ms-D in reply to Hidden]

It can only get bettee right. My right ankle is swollen and got a small lump visible but hey ho. Have a lovely day. Is the decorating done now?

[Hidden in reply to Ms-D]

2 rooms done . Waiting for the decorator to come back his poor wife has lupus and like us all her care has been poor and she really isn’t the best but he hasn’t forgotten us . I trust him so I’m prepared to wait. Try and enjoy your day even with this miserable weather. I have just woken up to rain pouring through our double glazed windows via the vents?? Don’t understand so need to investigate 🙄🙄x

[Ms-D in reply to Hidden]

Doesnt sound good. Hope it gets fixed. Its miserable in london too. Not stopped raining all night. And heard there were almost 13k cases yesterday....hhmmmm wonder if thats high enough for Boris lol

[Hidden in reply to Ms-D]

Schools won’t close even if they are dropping in the streets🙄