Simponi no longer working - time to change to a new biologic?

[CarolineGN]

Hi Everyone

This is my first post but I have found this site and everyone’s comments so helpful in the past.

I’ve been on Simponi for 2 years and it has worked brilliantly until recently. Now it seems it’s stopping working and after being in remission for sometime with no flares at all, it is getting progressively worse. I’m hoping someone can share their experiences in changing from one biologic to another. My understanding is that on the NHS once you come off one biologic you can’t go back on the same one. (From a funding point of view your Rheumatologist needs to state that what you’re taking is no longer working before you can change and if it no longer works they will not fund it again in the future). My concern is maybe this works 70%, maybe I should be happy with that. The next one might only work 50%, then I can’t go back.

So at what point do you decided it’s not working well enough? How easy was it to switch? Did you have to have a break between drugs?

Thanks in advance

[Hezekiah]

Hi CarolineGN, I appreciate your fears about moving on from Simponi and then potentially never being able to return to it, but would just like to mention that there are circumstances when NHS does permit returning to an effective drug (eg when you switch from a generic original drug e.g. Enbrel, then change to a biosimilar e.g. Erelzi, you may be permitted to switch back to Enbrel). However, I can appreciate this is not particularly relevant to your case as in theory you would be moving from a drug considered to be ineffective. It seems rational to anticipate that you would not be allowed to return to a drug which is deemed ineffective. May I ask if you have been on other biologics apart from Simponi?

[CarolineGN in reply to Hezekiah]

Hi Hezekiah, Thanks for your reply. Simponi is the first biologic I’ve been on.

I actually had a call back from the biologics nurse at the hospital today and they suggested that I switch to MTX injections rather than the tablets as this tends to be more effective and may increase the effect of the Simponi. So I’ll see how I get on with this as a first step.

[Hessie5 in reply to CarolineGN]

Your Rheumatologist usually recommends the switch and applies for the funding. I am now on my seventh biologic - not convinced they work for me! Hope you find one that works 😌

[CarolineGN in reply to Hessie5]

Hi - sorry to hear that the biologics are not working for you so far. The Simponi was like a wonder drug for me when it first kicked in. At the NRAS talk in London last month, the consultant who was from St Thomas’ (I think) said that under their interpretation of the NICE guidelines patients would only be allowed 4 lines of treatment so in effect you couldn’t keep trying all the biologics in the hope of finding one that works. It seems different NHS trusts have different interpretations.

[Amylau]

hello, in response to your 'cant go back on a drug after youve tried it' -i was on humira for abour 4 years and it worked amazingly, slowly started to not work so i was switched over to Benepali. that didnt work at all so they switched me back to humira to give it a try again as i thought the same, atleast some relief is better than none right! (unfortunatly it didnt work but in answer to your question, it was done for me so i guess it can be done). after the second try of humira im now on tocilizumab (also not working but just gotta keep trying!) i hope yours works out! and try not to be too focussed on the what if, what next. i know its easier said than done, but there are pleanty of options!

[CarolineGN in reply to Amylau]

Hi Amylau - thanks for your comments. It’s good to know that it may be possible to retry the biologic. I do hope you find some relief soon yourself.

[Silverpixie]

Hi Caroline. I started on cimzia which worked for a while then simponi which again worked briefly. Then I had rituximab infusions which didn't work at all. I then had orencia which gave about 70% relief but my consultant put me on tocilizumab 2 years ago. It took 4 months to work but I haven't felt this well in years. I have no side effects. Today i have walked to work and back (4 hours) taken the dog for a walk and done a pilates class (walked there and back too!). This is a woman who couldn't dress herself 5 years ago.

I think what I am trying to say is that you just have to keep going until you find one that suits you. I take azathrioprine and leflumonide too. I also have autoimmune liver disease so I'm not allowed methotrexate

[CarolineGN in reply to Silverpixie]

Hi Silverpixie - thanks for sharing. I’m glad to hear you have found the right drug combination. I’m looking forward to getting back into remission. PS I find Pilates really helpful too.