Have to return to Actemra

[Plains]

The last post I indicated I was stopping Actemra with approval from my doctor. I had gone two months without it and felt fine just being in 3Mg of prednisone. Since I am leaving on January 30 going south for two months I thought I would ask for my sed rate and CRP to be checked because I was starting to get aches and pains. My numbers came back high. I guess I should not be surprised just disappointed. I was hoping to get off at least one of the drugs.

I have not heard from him yet, but I suspect and I guess I want to start the infusions again.

[DorsetLady PMRGCAuk volunteer]

Hi,,

I think I might want a bit a more clarification on blood tests before going back on Actemra.

How much have they increased? Is it just a one-off test, or are they rising?

If it’s just a one-off we do suggest not taking a knee jerk reaction, but to get them tested again before making a decision.

Plus as they would have been low on Actemra if you are judging the latest reading against those taken whilst you were still in it, it’s not a like for like comparison.

And finally how significant are your return of symptoms… are you sure it’s all down to your illness, and not just the aches and pains of normal life?

I guess you want to get things back under control before you go away, but wondering if treating it as a flare with a temporary increase in Pred may well do the job.

See this link re flare if not already aware -

healthunlocked.com/pmrgcauk...

[Plains in reply to DorsetLady]

Hi, I don’t know why I am not getting he feeds each day. I have to go into my count to see anything. To answer your question, my CRP went from >1 to 17, my sed rate went from >1 to 19 in a little over two months. My hips, knees and shoulders are hurting. I doubled my prednisone for a few days and it helped a little. I should have stayed longer. I will now until I get in infusion and start to feel relief. I never had any pain while on Actemera and 3 mg of prednisone. I am now having problems with my sugar so that med has been upped and on a strict diet.

[PMRpro Ambassador in reply to Plains]

Sounds as if you may be among the 50% of patients for whom Actemra isn't a 100% replacement for pred and you continue to need a low dose of pred to manage the other causes of PMR inflammation besides IL-6.

[DorsetLady PMRGCAuk volunteer in reply to Plains]

See this re forum issues -

healthunlocked.com/pmrgcauk...

PMRpro has replied on other matter.

[PMRpro Ambassador]

As DL says - what were they? And do you know what they were before going on Actemra? Just because they are higher than they were back on Actemra, doesn't mean it is due to PMR. they aren't that specific.