Flare with no blood markers

[winfong]

Apologize if this has been asked before ... I've had 2 flares this year, but neither resulted in any real change in my CRP and ESR numbers (which are thankfully very low now). Felt absolutely miserable tho - aches, pains, fatigue ...

Rheumy seems to think it has to be something other than the LVV/GCA/PMR I've been diagnosed with. Does that make sense? He said it was probably osteoarthritis with maybe a reaction to reducing my pred below 5 (I'd been doing 0.5 mg less every 2 weeks).

What do you all think?

[SheffieldJane]

Are you actually tapering though, or just dropping by 0.5mgs cold turkey? Please look at the tapering programmes outlined on the site. It is important to go really slowly at your stage in order for your adrenal system to begin to work independently and sufficiently. I have the same conditions as you, I am on 8 mgs of Pred and weekly Actemra/Tocilizumab injections. I am also achey and very fatigued. I share your misery. I think we have to just grit our teeth and tolerate this stage, I sleep a lot. I will be seeing an Endocrinologist when I get to 5 mgs to assess the damage to my adrenals by means of a Synacthen test.

[Sophiestree]

Aren't you on Tocilizumab? They should know that it would affect inflammation markers? Tad worrying 😬

[PMRpro Ambassador]

He could well be right about the being below 5mg and adrenal function not having kept/caught up as those are symptoms that could be due to adrenal insufficiency, But it is possible to flare without the markers rising while on pred - there has to be enough inflammation for long enough to trigger the production of the proteins that cause the markers to rise, if that doesn't happen, they won't go up.

You probably need to slow the reduction down - 1/2mg per month seems more suitable. After 5mg 1/2mg is still more than 10% and the slower the better in tickling the adrenal glands into functioning properly without feeling rubbish. Did your "flares" coincide with other reasons for stress - more activity, emotional overload, something exciting?

[lindyloy]

Hi, I was told the same at my last phone consultation, I had finished Pred. and was just injecting Tocilizumab once a week. I got lots of aches and pains etc, told the Rheum. and she said to think about taking 1to 2mgs. ofPred. to prevent flares as it might be some kind of Arthritis that the Pred. was treating and it was showing up now. I decided later that I would go back to 2mgs. and taper again more slowly. I am now tapering by .5mgs. a month (I had to take an extra 5mgs. of Hydrocortisone when I re-started Pred. Ihad a synacthen test earlier this year and they were going to drop the Hydro dose, but now they can't) The only fly in the ointment now is breathlessness and fatigue, but on the other hand, I could sleep on a clothes line! Hope things get better for you.

[PMRpro Ambassador in reply to lindyloy]

And she didn't consider that you MIGHT be amongst the 50% of patients for whom TCZ doesn't deal with all the GCA inflammation? There are 3 (at least) different mechanisms for the inflammation in GCA, TCZ only works on one of them because it isso specific. Pred kicks them all into touch.