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@dadcue

I don't really know how long I will remain on Actemra. I have had a total of 32 injections over the last 8 months. I told my rheumatologist during a phone visit in June that I would be willing to increase the interval between injections. The only response was that we will discuss that in six months...so I assume in December I may go to injections every two weeks. If you ask me, I don't think my rheumatologist has a plan. I feel much better than anytime in the past 12 years ... I don't want to rock the boat but I really do think I would be fine doing injections every two weeks.

I was hoping to get someone's experience with tapering off Actemra. It was recently FDA approved for GCA but not PMR yet. I'm familiar with TNF inhibitors for inflammatory arthritis and those people just stay on a biologic until they stop working and then they usually switch to a different biologic.

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Replies to "I don't really know how long I will remain on Actemra. I have had a total..."

Yes, it would be interesting to hear about an actemra taper. When I was being shown how to administer it, the nurse told me that her clients are all taking it (by infusion) for RA, and would be on it for life. Infusions are about to be ceased and they have to move to injections and they are not happy.

I went to Actemra injections every two weeks after a year of weekly Actemra injections with no significant flares. I've been fine, with no relapse after 6 months of Actemra injections every two weeks. Also, some of the side effects of Actemra have gone down; in particular the increase in LDL cholesterol went down, almost to my normal levels experienced before being ill and going on Actemra.

I was originally diagnosed with non-cranial Giant Cell Arteritis due to severe inflammation levels (for example, CRP= 347 mg/L).