Methotrexate and Tocilizimubab

[claireyj]

Hi everyone hope you’re all enjoying this lovely weather and the joints are behaving 😎

I’m currently on Tocilizimubab which is just amazing changed my life .. however , I’m also injecting 12.5 methotrexate weekly which makes me feel just awful .. headaches , lethargy just horrid . I’m keen to speak to Rhumi team about using Tocilizimubab alone , I’m just wondering how many of you take both or just Tocilizimubab as a mono medication ?

Thanks Claire

[Hidden]

Yes - I will only ever take a mono injection of a biologic or a single dose of any RA medicine. This is largely due to my concern over taking too many medicines at once. My current abatacept injection seems to be working on its own- so yes - do try without the Methotrexate- I have tried RA medicines over 20 years and have only ever taken single medicines.

[claireyj in reply to Hidden]

Thank you I’m definitely going to discuss , I really don’t like methotrexate and like you taking too many meds .

[davannh]

Yes for the last six years. Stopped Methotrexate, now take Only Tocilizumab. Absolutely no change. Tocilizumab has worked really well for me.

[Brushwork]

I am taking Tocilizumab as a mono therapy, having suffered problems with other meds. It is working a treat for me.

[HanaleiBa]

I do combo - 20mg of MTX and Toc every other week. It’s been the magic combo for 3 years! (Hope I didn’t jinx myself there). But, I do really well on MTX so am lucky that way. Good luck!

[Katiecatweazel]

Hello there, I successfully took TCZ as a single Biologic treatment for 10 out of the 12 months I was on it (plus tapering Pred) and was put on MTX to prevent a 'cliff edge' from the last 2 months when TCZ ended. I didn't get on with MTX and am now on just Pred by choice, as an extension to TCZ for me is not on the horizon. Regards.

[weymouth321]

Morning Claire ,

Yes , my consultant has told me last month that I can now drop the Leflunomide tablets, and just have the monthly Tocilizumab hospital infusions from now on , so , yes , just having the Tocilizumab by itself ( my 8th infusion next week ) All’s good + had my 2nd Astra Zeneca vaccine last week .

[claireyj in reply to weymouth321]

Morning, I have a phone appointment next week so I’m hoping my consultant will agree to dropping methotrexate or at least reducing and maybe just every other week . Glad you’ve got sorted and glad it’s all working for you .

[Metal-legs]

Hi ClaireI empathize with you, I had the same problem with methotrexate causing horrible side effects with tocilizumab. My rheumy stopped the 10mg methotrexate a few years ago as he said data shows tocilizumab works just as well as a monotherapy. And he was right, hope you can find a solution.

[claireyj in reply to Metal-legs]

Thank you and yes that’s exactly what I’d heard so I will push to use Toci as mono . Glad you’re doing well .

[Metal-legs in reply to claireyj]

Sending you best wishes, hope you have a good outcome.

[claireyj]

Hi all thank you for your replies a couple of weeks ago , I’d thought I’d just update ..

Had my rheumatologist call they’ve agreed to reduce my methx dose to 7.5 mg which is the lowest I believe . They explained that Toci can be used alone but methotrexate helps stop your body building up antibodies to the biologic and stop it from working so well . They feel this is the best option for me as I’ve been doing on 2 biologics before and had to stop as they stopped working , so I see the reasoning for me personally and I’ll see how it goes ..

Enjoy the sun everybody and hope your joints are behaving ..

C x