Reducing advice from high steroids following GCA scare please

[Jlml]

I had my scan yesterday so awaiting results. GP also rang a couple of days ago to say that my bloods from last week have come back much better. ESR had dropped to 7 from 40 in 10 days of taking 60mg of pred. I dropped to 40 yesterday and have asked rheumatologist what and when I can drop again. Not sure I will get an answer to the New Year and that’s a bit late !I really don’t want my body to get used to these high steroids as I found it so hard to come off of them last time.Any advice would be greatly received on reducing these high doses safely.? One more question please. If my ESR has dropped that quickly does that suggest PMR as opposed to any diseases.

[SnazzyD]

I was kept on 40mg for 6 weeks, even with normal blood results, then it was 35mg. A normal reading just means the dose is keeping inflammation down but for how long without it one can’t tell. If Pred can affect scan results, it can affect blood markers. It is good they are not rising still but it doesn’t mean you can rocket back down without consequences if your autoimmune activity is still high.

When you say you had trouble getting off steroids, what do you mean?

[Jlml in reply to SnazzyD]

Hi Snazzy,

Thank you for your reply. I need someone to ground me.

Perhaps I should stay on 40 mg until I see rheumy mid -Jan.

I struggled with a lot of withdrawal symptoms last time such as fatigue, lack of energy and I hated it.

If my ESR has dropped that quickly does that suggest PMR as opposed to any other diseases.

[SnazzyD in reply to Jlml]

Were these withdrawal symptoms at the end of the dose ladder or on higher doses? The autoimmune condition itself can make you feel bad too, even with Pred helping to keep the inflammation at bay.

I don’t think you can equate speed of reduction of inflammatory markers with it being PMR or GCA. Pred gets rid of any inflammation, whatever the disease so can’t be used as a diagnosis or not of other diseases, especially at high doses where you are now. I never had inflammation markers out of the normal range ever, but I was still treated for GCA.