Just checking...if you have a choice. Which is the better option for PMR and GCA? IV or SQ?
So far, I have had five, 400mg. (6mg. /kg. ) Actemra infusions which have helped a bit, but I still have scalp tenderness, intermittent headaches, ear and jaw soreness, tongue just a bit sore, and elevated tinnitus.
One rheumatologist thought irregular absorption rates with SQ would make it less potent than the infusion.
The other thought is that SQ would provide more regular dosages.
Your thoughts?
The clinical trials were all done with weekly or biweekly injections. The infusions were never trialed so technically, I suspect that using the infusions is off-label.
Really, the inflammation and symptoms need to be under control before reducing the pred dose at all and Actemra has not been trialed as the sole management as far as I know - very unethical with a disorder where irreversible loss of vision is a real risk.
Other people have mentioned that the symptoms seem to be reasonably managed for the first week or two after the infusion but then slowly increase again until the next infusion is due. With the weekly injections the control is topped up more often, providing the inflammation is under control before starting to taper the pred - and that can take a few weeks at least of Actemra. I felt it was more like the 2 months my very experienced rheumy said to wait before tapering and to do so only 1mg at a time. Actemra is very good but it isn't a miracle either.
Furthermore, there are at least 3 autoimmune mechanisms underlying the inflammation in GCA. Actemra only works for one of them and if YOUR GCA involves the other two you continue to require adequate pred. In the clinical trials, only half of patients were able to get off pred altogether - the rest continued to required IRO 8-10mg ongoing.
To me, it sounds as if your GCA is definitely not under control - you probably need a course of pred to get it there. And once that is the case - weekly injections are possibly more effective at maintaining a level of inhibition of the IL-6 because there are never a lot of receptors that aren't occupied. Only topping up every month leaves a period where there are unoccupied receptors and the IL-6 adds to the other bits of inflammation.
Oops. I failed to mention I have also been on Prednisone 65mg. beginning in January. Currently at 35 mg. The hope was for a more rapid taper, but as you can see, it's been a bit rocky.
The taper from 65mg to 35mg has been pretty fast by normal standards, i.e. done without Actemra - and my rheumy would have told you to take it slowly and wait for the Actemra to start working. And to be honest - doesn't need much below the dose you REALLY need for the inflammation to build up. I suspect there are always some receptors that aren't filled up and that increases through the month up to the next dose, so you are never on top of things.
Hmm. Still too fast? 50-65 mg Pred x 2 months.40-50 mg. x 3 months
35 mg. x 1 week
Sounds like I maybe I could bump up to 43mg for a week or two?
And try the SQ instead?
Upcoming dexa, as well.
As always, thank you for your time and thoughts processes! So grateful!
Did the symptoms all go in the first 2 months at the high doses? If so, when did they return?
No, the symptoms never went away completely. But since my fifth Actemra infusion, I have sometimes gone 12 hours without, so there has been a breakthrough.
I have been having infusions for almost 2 years here in the US. I am currently on 5 mg of prednisone. I was able to get to 1mg at one point but my GCA started to act up. I had to up the dose for a while then a slow taper. My Rhumy wants me to stay at 5 mg for a while. I am going to see what he things about having me have the infusions every 5 weeks instead of 4. I have no PmR issues right now. I did at first. I am very happy I can get these infusions for a small co-pay. I would not have been able to afford it any other way. I should add that I did try methotrexate for a while and it did nothing for me.
Five mg. sounds awesome. (Compared to these doses). Looking forward to the days of lower doses. I hope your GCA never flares again.Methotrexate has also been considered for me. I think I will give the Actemra more time for now. It sounds like it's benefits are fairly negligible for GCA.
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