After Tocilizumab what next?: Has anyone completed... - PMRGCAuk

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After Tocilizumab what next?

Katiecatweazel
Katiecatweazel

Has anyone completed their year on Tocilizumab for GCA? Were you then prescribed a 'step down' medication for six months, such as low dose Methotrexate, to follow? I'd be pleased if you could give me any information, I'm intolerant to so many medications. Best wishes everyone.

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I have been on TCZ for 4 months and am wondering what will happen..... No doubt my Rheumatologist will be discussing the options.

Hello, thanks for replying. I will post any further information I get on what happens after November. Meanwhile, good luck and I hope you and Devoid will kindly pool your knowledge. Thank you

Jumpshot
Jumpshot in reply to Rugger

Following. I have been on since December. Improving and able to decrease Pred. My Dr. Was disappointed last visit that I had not been able to come off Pred. In attempt, I havde tried and have been unsuccessful. Feeling as bad as I did 20 months ago when first diagnosed. Currently on 5 mg. To clarify, are most of you still on Pred? Have you been told you should be off of it as a result of TCZ?

PMRpro
PMRproAmbassador in reply to Jumpshot

Remind your doctor that in the clinical trial of TCZ in GCA only half of patients got off pred entirely. Half required a much reduced dose of pred to continue symptom-free, the patients I have come across seem to need somewhere between 5 and 10mg. This is probably because about half of patients have more than just the IL-6 mechanism causing their GCA - it is thought there are 3 altogether, might be more, who knows! TCZ only works on the IL-6 mechanism so if the others are involved the pred is required to manage the inflammation they cause.

After 18 months you still need to reduce slowly at this stage to allow adrenal function to return.

Jumpshot
Jumpshot in reply to PMRpro

Thank you so very much for this information! Helpful for me in understanding as well. I have been struggling with her response at this appt. I left feeling so deflated and confused. Tried to speed up my decrease without success, that has left me feeling SO incredibly discouraged. Mind you, November I had to increase Pred to 50 MG for GCA. At my last appointment in June I was down to 6.5mg of Pred. Currently at 5. Again thank you so much for this information. I feel better armed to fight this awful battle of PMR/GCA

Hi I will have completed a year in October, I have been much better on it , but have concerns because I’ve been told by consultant it’s the year then it’s stopped. I have recently recommenced methotrexate at 10 mg weekly, I have never felt this drug benefits me but the consultant said I needed it for when I stop the TCZ. On what I have read most people seem to stay on a very low steroid dose , but my consultant seems to have changed his mind about this. I didn’t get on well with higher doses of steroids but under 5 mg I haven’t had too many problems. Sorry this goes on, I am very interested in others experience

Thank you for your thoughts. It seems I would go on to something else when the TCZ stops in November, not before. I am currently tapering to 2mg Prednisolone with a view to zero. I'm pleased to hear about your current experience and that TCZ has been beneficial.

The plan my consultant has is for zero pred, whereas prof Dasgupta favours a small dose of pred, I just dread the thought of going back to how I felt pre TCZ

Hello, Agreed! I'm a big fan of Prof. Dasgupta and as I'm intolerant of so many other meds I might well opt for this approach, as well as a test to see if the adrenal glands are working. My next telephone appt. is in 5 weeks.

Hi

Yes completed 12 months in February this year. There was no medication required after. It stays in your system for aprox 3 months, which still affects you immune system, hence I had to shield.

I found it took about 3 to 4 months to feel completely, completely “normal”.

My next check up is next month and unsure if I have any more after that.

Good luck with the Tocilizumab and the after journey.

Thank you very much. Were you on Prednisolone before and if yes, at what stage did you stop taking it ? Great you feel normal now and trust your check up confirms. Best wishes.

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