Life after Tocilizumab?

[tweety_pie]

I've been off steroids since mid-May. Continuing to take methotrexate (15mg weekly) and Toxilizumab weekly. I seem to be doing well - bloods fine and health ok. I'm seeing rheumatologist next week and my concern is I'm guessing that I won't be eligible for further Tox after my current prescription runs out as it's now a year since first prescribed. Could anyone share their own experience of being in this situation? How do we know if we are lucky enough to be in remission? Is the drug just stopped and 'see what happens'? And if symptoms do happen, is it back on steroids? I do feel nervous about it all starting up again. Grateful to hear anyone's experience or advice

[Rugger]

Hello t-p (love your name)

I had my ration of TCZ and tapered the pred to zero by the time the TCZ ran out. That would have left me on nothing at all! (This was about 2 years ago.)

My Rheumatologist was fearful that I would relapse, so started me on MTX, but after 6 months, my inflammation levels had risen, indicating that the condition was still active. I went back on pred and she stopped the MTX, as it obviously wasn't doing much for me. The thing about "it all starting up again" is that it never went away. The TCZ blocked the inflammatory pathway, but without it the inflammation was able to show up again.

18 months later, I'm still on pred, having tapered as low as 2mg 6 months ago, but blood tests showed the inflammation was not under control, so the dose was increased again. I'm on 4mg just now.

I won't know if I'm "lucky enough to be in remission" until I've been off pred for some considerable time, with no return of symptoms or high levels of inflammatory markers.

To summarise! I felt very well on TCZ and assume it was helping to control my condition. However, once off it, the inflammation was allowed to build up again - wasn't controlled by MTX, so I'm back on pred.

Best wishes to you.

PMR : 2016

GCA-LVV : 2019

[tweety_pie in reply to Rugger]

Good to hear from you Rugger and of course you’re quite right … the inflammation pathway is being controlled by the meds right now. I’m glad you similarly had a good experience with TCZ. I’m only sorry that the possibility of continuing it is not yet available. The rheumatologist insisted I start with methotrexate before TCZ would be prescribed so I guess that will mop up somewhat (not the right terminology!) after TCZ no longer available. I hope so. All the very best to you too on this journey