Increase steroids?

[Griggser]

So had a blood test today, first since December and I have a CRP level of 8.5. Currently on 13mg of pred. Started on 15mg 6 years ago! In constant pain and trouble sleeping so should I increase again. I really don’t want to but pain levels are telling me I should?

[PMRpro Ambassador]

Is it PMR-type pain? If so it might be worth trying a bit more - so you can at least tell the doctor when you see them. I suppose it is hardly surprising you haven't had bloods for so long - but it really doesn't help does it!

[Griggser in reply to PMRpro]

It certainly feels like PMR pain to me. Worse in the mornings for sure. The doc did say he would speak with me when results out. Only had the blood taken this morning so was surprised the results were already available. I’ll see how the weekend goes and speak to him on Monday. I’m thinking he’ll say I need to speak to the rheumatologist!

[SheffieldJane]

I am sorry that this is happening to you after 6 years. I am aware that I am fortunate in that my Rheumatologist is at the cutting edge of our conditions. I know that my PMR began to behave unpredictably. My Rheumatologist has initiated a new course of action following signs of Large Cell Vasculitis in an Ultrasound Scan. This involved petitioning for the drug Tocilizumab. Hopefully, this drug will enable me to feel better and to get off Prednisalone after 4 years for PMR. I just wonder if there aren’t more of us, who need a change of course?

I cannot add anything more useful because I am in the dark myself. I just offer it as another path to explore.

[Manchild in reply to SheffieldJane]

My doctor has been trying to get me on Acterma for a while now (inUSA). Really ready to consider it within the next few months if I can’t reduce any further without worst symptoms returning.

[SheffieldJane in reply to Manchild]

I start it in 2 weeks. I have had so many encouraging messages about how well it is making people feel that I feel almost excited at the prospect, in spite of my terror of heavy duty drugs.

[Jackoh]

Must be so frustrating for you after 6 years. I remember your name as I have been hanging around here for about the same time. If you need more you need more and that’s it really isn’t it. You could try and just see if that helps with the pain and then speak to your GP. We are not in control are we but have to go with the flow of this condition . Let us know how you get on.

[nuigini]

I'm in much the same boat, I'm at 14 mg after starting at 40 mg six years ago. I was comfortably at 13 mg for some time but had a flare after trying a .5 decrease using DSNS (there may have been additional reasons for the flare). I increased to 17 for 6 days. Now I'm struggling to get back to 13 mg. I've never got below 10 mg in all these years.

You are not alone.