Leflunomide and tociluzimab

[virginied]

Hello, I've posted previously about massive flare-up starting again 6 months ago while.on tociluzimab. Rhumatolog agreed tociluzimab is not working anymore and now prescribed to me leflunomide on top.

Is this combination a good one? Will leflunomide make the pains go away ish ?

Thanks

[KittyJ]

You can only try it and see really, What works for someone else might not do the same for you. That’s the infuriating thing, it’s trial and error until you find your meds. Hopefully that combination is the key for you. 🤞🏻

[DenMum]

I have been on Sarilumab (which works in the same way as Tocilisumab blocking IL6) since March 2022. Started getting flairs a year later and my Rheumy thinks I have developed antibodies to the Sarilumab. Put me on Leflunamide as well. I haven't had a flair since!

There are minor side effects but it seems to be working for me. As KittyJ said, we are all different. I hope it works out you .

[virginied in reply to DenMum]

That's great news , thanks

[bpeal1]

Unfortunately we are all different. What works for one doesn’t for another. I know it’s frustrating but all you can do is try it and see if it does. Fingers crossed this is the right combination for you.

[Retirednhs]

Hi, If rhe toczilimub is not working at all surprised they have left you on it, adding leflumanide may help to make that work but if it were me if after a month on them both l would be asking why you are still on the toczilimub as there are now other drugs to try as well. When my Toczilimab stopped working 6 yrs ago my consultant changed me to 6 monthly Rituximab and l have had very few flares on that plus a low maintenance dose of steroids which l was already on . Worth having a discussion . Hope all goes well

[virginied in reply to Retirednhs]

Thanks, I think because tociluzimab worked well for me for 9.years , they want to persevere with it and try to add something else. I went from being able to run 5 km last to not being able to walk without pain now .I hate not being able to be active and now of course I'm putting on weight 😪

[Retirednhs in reply to virginied]

I had been on Toczilimub for about 11yrs l was on the trial of it as you say really suited me but at the finish l was feeling really unwell and had abnormal blood results so had a phonecall from consultant to tell me and 3 months later went on Rituximab they needed to know my body had cleared it and l was feeling better in myself. I hope all goes well for you and you settle down

[Patreece]

I don’t think toxilizumsb is good at all flare ups are unreal never heard of other one I’m waiting to go on the intravenous one as all ones I’ve had n that’s many do nothing . I find toxilizumab stops working 3-4 days before my next one due so flare ups are constant for me if that helps x