Actemra/tocilizumab

[Suzorand]

Hi, I’m looking for any of you who have experience with these infusions. I’ 14 months in and can’t seem to taper off Prednisone., also taking Methatroxate. My doc wants me to try these infusions. Does anyone have experience they would like to share?

[HeronNS]

I have no experience with Actemra. However if your problem is you can't taper off prednisone, rather than you can't taper down to a low dose, I venture to suggest your PMR is like that of most sufferers in that it lasts for several years. Pred is not a cure, it only manages the symptoms. I am not sure that even Actemra (tocilizumab) is considered a cure, but maybe it is for some. Likewise methotrexate is only what is called a steroid sparer in that for some people it enables them to achieve a lower dose of pred sooner, but it is not a replacement for pred.

[SnazzyD]

14 months in is early days for most people really so I’m not sure why your condition is being seen as intractable at this point. What dose are you on, are you getting stuck at high doses? What happens when you try to reduce? There are a number of different mediators of inflammation and Actemra deals with on of them Interleukin6, so it might help if that one is predominantly involved in your autoimmune activity.

[DorsetLady PMRGCAuk volunteer]

Not sure whether you have GCA or PMR or both, but as stated 14 months is not long for either/both of them…despite what your doctor obviously thinks.

A bit more info about you might be helpful…..and in UK this drug is not authorised for many with GCA or LVV , and certainly not for PMR

[DeepThought2]

Dear Suzorand - I have been prescribed Actemra (subcutaneous injections) for suspected GCA/large vessel vasculitis (LVV) in February this year. I then also started with 40 mg prednisolone and was able to taper down to zero within approx. 5 months. I have no side effects from Actemra and all LVV symptoms are gone (I had manly systemic symptoms such as fever and fatigue). I am working normally and I am almost back to my last year‘s exercise level (e.g., 2100 km cycling since April). Please consider that every patient is different and I might be really amongst the lucky ones. There are others in this forum taking Actemra and they might share their experience. I had increased interleukin-6 levels at diagnosis so that Actemra as an interleukin-6 receptor blocker seemed a reasonable choice.

[PMRpro Ambassador]

They don't usually use infusions for PMR - actually, neither they nor injections are approved for PMR, just GCA, so funding can be a problem. You don't say where you are? Country makes a big difference.

But frankly - still requiring pred after only 14 months of PMR is hardly surprising. Half of patient need up to 6 years to get off pred, only1 in five are off pred in a year but remain at a higher risk of relapse. By 2 years 1 in 3 is off pred. PMR isn't a short term condition and it is rather more complex than many doctors think