adrenals and cortisol

[pog165g]

Hi diagnosed with GCA Feb 20 initial dose of pred 80mg tapered down to 5mg in first year, had cortisol blood test then synthac test May 21 which showed low cortisol have been on pred dose of between 5mg and 3mg for the last twelve months, just had cortisol blood test 9am Thursday by Thursday afternoon hospital rang and said get here now your cortisol levels are dangerously low so went straight to hospital for hydro cortisol jab and to be pumped full of steroids, they have told me now to slow taper to 0 pred to stop this happening again, My question is as being on 3-5 mg of pred over a year my cortisol has gone from being low to dangerously low how is tapering to 0 mg going to improve the situation ,when i asked this question they just looked at me as if i was stupid.

[DorsetLady PMRGCAuk volunteer]

They are assuming that by tapering VERY slowly your own adrenals will take up the slack from the pred , see this link explaining what happens when you are on steroids -

Whether what they assume will actually happen remains to be seen.

What dose are you on at the moment, and have they give you any advice other than -reduce slowly- in case you have an adrenal crisis?

healthunlocked.com/pmrgcauk...

[pog165g in reply to DorsetLady]

They put me up to 10mg for two weeks , then 1mg reduction every 6 weeks

[DorsetLady PMRGCAuk volunteer in reply to pog165g]

okay -but maybe slow that down even more as you get below 5mg….

[pog165g in reply to DorsetLady]

Many thanks for you advise, i have a appointment on the 19th April with my rheumatology nurse, so hopefully will get a exact plan then

[SheffieldJane]

With that result I would be using a pill cutter to halve an uncoated 1 mg Pred tablet and be using DorsetLady’s tapering regime, paying close attention to symptoms such as fatigue, dizziness and abdominal pain. I would also request an emergency hydrocortisone kit so that you or someone close can give you an injection, if you went into an Adrenal crisis.

[pog165g]

many thanks for your advise i will certainly request a hydrocortisone kit

[PMRpro Ambassador]

Stupid is as stupid does - and they are in the queue for that too! Putting you up to 10 will just suppress the adrenal production further and I fear your rheumy nurse is unlikely to be a lot of help either.

You need an endocrinologist and a rescue kit. And I personally would start at 8mg at most.