Sub Optimal cortisone levels

[NZShez]

Looking for some advice please. I hav Ebert taking prednisone for 2 years for PMR. I successfully tapered down slowly to the 5 mg that I am on now. Two synacthen tests have shown that I have sub optimal cortisone levels. I was prescribed hydrocortisone to replace the prednisone but put myself back on to pred as I developed moon face ( again) but mainly because I felt so ill around 3 pm when due to take a second dose. This wasn’t manageable whilst working.

Over the last 2 weeks I have been ill twice. Feelings of severe nausea, unable to eat, fatigue and extreme pain to most parts of my body; but mostly to the PMR hotspots. I have doubled up my pred from 5 mg to 10 mg and both occasions until I have felt better

Would any one know if this is due to my low cortisone levels? I see my Rheumatologist in 2 weeks

[PMRpro Ambassador]

Very difficult to say. Are you sure you weren't unwell due to something else? With poor cortisol production any stress due to illness would also have an effect - that is why you are told to increase your steroid dose. I fully get the idea that using pred is far easier than HC - another lady on here with adrenal failure has returned to pred instead of HC because it caused all sorts of unpleasant side effects whereas she is fine on pred.

Have you seen an endocrinologist? Though they aren't always helpful and a rheumy with the experience may be far better.

[NZShez in reply to PMRpro]

Thank you for replying. The first time I was ill 2 weeks ago I thought it was a virus; but I think it a bit strange to have the same symptoms again.

I haven’t seen an Endocrinologist but was thinking of seeing one privately to get a second opinion.

I’m just recovering now , still very achy. I will see my GP if it happens again