raised Sed rate and CRP

[Plains]

I just returned to NY after being away for two months and not taking actemera infusions since November. I will never do that again, I “thought” since I went a few months without actemera I would try not taking it, just keeping at my 3 mg of prednisone. I am not back to square one but my sed rate is 59 and my CRP is 21. I was in a lot of pain for the two months I was in fla and increased my prednisone for a few days to 10, my sugar went way up so I went down to 5 mg and just went with some pain.

My question is, I just my infusion on Thursday and feel a little bit better. I am still taking 5 mg of prednisone but I am also still in pain. The bloodwork was done on the same day just before I got my infusion. How long will the actemera take to really kick in? Should I go up with my prednisone or just continue to put up with the pain for another month,

Thank you for your help.

[DorsetLady PMRGCAuk volunteer]

No experience of Actemra so cannot help on how long it will take to kick in.

But would just say…why didyou put up with 2 months of pain? Had you acted quicker and use the flare protocol [so for longer than a few days, whatever that means] you might have got things back under control. ..and sticking on 5mg and still in pain indicates you need more Pred. You could try 7.5mg, but there’s no guarantee it will work.

As you have discovered it’s not a good idea to change 2 things at once - stopping medication and being in a difference environment [which in itself is likely to upset the applecart no matter how enjoyable it may be].

You probably need to discuss with your doctor re increasing Pred to get things back under control.

[Plains in reply to DorsetLady]

Thank you I have an appointment with my doctor. Never do that again,

[DorsetLady PMRGCAuk volunteer in reply to Plains]

Good, hope you get back on track…

[PMRpro Ambassador]

Difficult to say - there are a lot of receptors on the cells that need to be reoccupied to prevent the IL-6 attaching and exerting its inflammatory effect. The studies weren't done with infusions - where it happens only once a month. The injections can take a couple of months to take over the receptors which are constantly being renewed into the bargain so either way, the effect may not be immediate. How long did it take at the start for you to feel the effect?

[Plains in reply to PMRpro]

I started feeling better the next day. I was shocked but my doctor explained it acts fast. I am still on 5 mg of prednisone but will go to 4 1 /2 starting Monday. I will stay there for a month or so and see how things go. So happy to be back on track. I will never stop the actemera again for sure!