PMRGCAuk
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Stopping infusions

I totally realize that there aren’t many of you with GCA that are on actemra infusions. But I will ask anyhow .... in April it will be two years since I was diagnosed. I began on 60 prednisone and went down to 0 when starting the infusions. I am doing soooo much better. Some tiredness yet ...like needing to sit down after walking for 30 minutes. Lots of trouble with steps. And a little dizziness once in awhile. What do you think about stopping infusions...rheumy is willing to try. I am 79 years old.

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First, congratulations on your reaching this milestone in your GCA.

I'm wondering when you in the course of your treatment you started Actemra. Has the frequency and dosage changed over time? How long have you been off Pred? Have you had many side effects? Were you taking an antihistamine at the time of your infusions?

The last I spoke to a Rheumy who has used Actemra to treat GCA was last summer. At that time she said the issue of how long to continue the Actemra was still unclear. I'm sure your experience will be important to others who will be contemplating stopping.

Good Luck. Please keep us posted.

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The only way to find out is to stop and see what happens. There is one person on the forums (not sure which though) who stopped for some months and then had a return of symptoms. As far as I know the rheumy just put her back on Actemra. The clinical trials haven't got as far as recommendations for duration of treatment - and different patients do seem to vary.

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Hi Buddyk, so glad to hear you are feeling well and that Actemra has worked for you. I had PMR for 6 years when I was diagnosed with GCA. I started Actemra 2 weeks ago. Felt great after first injection but the second didn’t seem to make much difference. Early days yet. I asked your question of when to stop the Actemra. my Rheumis (who had pts in the GIACTA study said once off Pred (or very low dose) and symptoms controlled would lengthen the time between injections (every other week, every third etc) and monitor symptoms. CRP cannot be used as any sort of indicator when on Actemra.

How many injections did it take for you to feel a difference?

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I’m having infusions once a month. Will be two years in May. I don’t feel any difference before or after my infusion. My only symptom is a tiredness after walking 30 minutes or standing for long. Guess the best thing is skip an infusion and see how I feel.

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I think a slow increase in the intervals between infusions may be a better approach.

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Might be hard to know if the tiredness is the GCA, Actemra, or being 79 years old😊 I would try to go a little longer between infusions and see how you feel. Go a week longer, but make an appointment for the infusion. I am 70 years old and have been on Actemra for 8 months, down to 2m of prednisone...but I can feel the old oesteoarthritis creeping in...but that is nothing compared to the PMR. I feel great. I am amazed as I reflect on how bad I felt last Spring.

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