Anyone had their biologic therapy changed from Benepa... - NRAS

NRAS

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

Ms-D
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

16 Replies
oldestnewest

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
Ms-D in reply to Lolabridge

How do the infusions work and any side effects?

Lolabridge
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.

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
Ms-D in reply to oldtimer

Thank you so much x

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
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

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

Ms-D
Ms-D in reply to jacbub103

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

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
Ms-D in reply to Knit12

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

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

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
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.

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
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

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