Endocrinologist and Hydrocortisone

[Skodadet]

Hello all

After many months of waiting I finally got to see an Endocrinologist as I have been unable to reduce prednisolone below 3mg without feeling really ill and in fact have been on 4mg since November. My 9am cortisol test was in the 200s. I have a little stiffness in the usual places at times but CRP has been below 1 for years. No signs of inflammation at all.

He is proposing to put me on Hydrocortisone 3 times daily at dosages of 10mg, 10mg and 5mg for two months to persuade the adrenal glands to wake up and then repeat the morning cortisol test. He didn't want to do a short synacthen test.

How early should I take the first dose and then how should I space out the other two? I'm a bit scared of doing this after 11 years on Pred but I feel it's worth a try. The Rheumatologist is convinced I don't have PMR any more.

Thanks for reading! Best wishes to all.

Skodadet.

[MrsNails]

Hi SkodadetIt’s really a question for your Endocrinologist or Pharmacist, we don’t have the experience of taking HC

My Mum had Adrenal Insufficiency after long term Pred for Asthma, she took hers at 8am, 1pm but l can’t remember what time she took her later dose.

It was that 1pm dose (or not) that caused her most trouble ie forgetting it then by 4pm she’d ‘be in a heap’ as she’d describe it.

We bought her a digital alarm clock, put it next to her Meds to remind her to take them with her lunch & she did very well on them.

Also if she had a bad Asthma Attack or Chest Infection they always gave her a short course of Prednisolone. She did remarkably well on that regime.

Good Luck 🍀

MrsN

[Skodadet in reply to MrsNails]

Thank you MrsNails.

[MrsNails in reply to Skodadet]

Don’t forget to wear an Emergency Bracelet & ALWAYS carry spare Meds.

[DorsetLady PMRGCAuk volunteer]

Ditto to MrsNails comments - plus if he only proposing it at the moment, I imagine you will get instructions when you actually begin HC.

[PMRpro Ambassador]

The biggest problem with the timing will be if the PMR hasn't yet gone entirely - and there is no way the rheumy can know, sorry for being sceptical but I haveseen so many cases where it hadn't gone.

However the first 2 doses are usually 8am-ish which is when the morning peak would occur naturally, the next peak is mid-afternoon so take the pred about 2-ish and the evening one will be for overnight cover although what they need is a really low level at midnight to trigger the morning spike. If the PMR is lurking then mornings might be a bit rough so we'll hope it isn't. But they should tell you times.

[Skodadet in reply to PMRpro]

Thank you PMTpro.

[Skodadet in reply to Skodadet]

Sorry.... definitely not PMT, PMRpro!

[PMRpro Ambassador in reply to Skodadet]

Not any more - but it was a problem

[piglette]

I would love to know how some rheumatologists have the ability to know that someone does not have PMR any more when they are still taking steroids. They must have a special crystal ball no one else knows about.

[MrsNails in reply to piglette]

The one like PMRpro ; DorsetLady & I have 😉 🔮 🔮 🔮

[Pollyanna16]

Hi Skodedet, when I swopped to HC from pred in preparation for my synacthen test the rheumy advised not taking my last dose after 4/5 if i remember rightly in case it affected my sleep. She just divided my dose into 2 though. Best wishes

[Skodadet in reply to Pollyanna16]

Thank you! How are you doing now?

[Sho-Sho]

When The endocrinologist put me onto Hydrocortisone after 5 years of pred for GCA, he said 10mg at 8.0. 10 at 1.0 & 5mg at 6.0 - so it mimics what the adrenals do naturally.

[Pollyanna16]

I’m ok but on 3.5 mg pred for the foreseeable. Hoping to reduce but need to find out what my adrenals are doing first.

[Amkoffee]

I developed adrenal insufficiency because of my long term use of steroids do to PMR. I'm currently taking the exact dosage of hydrocortisone that he recommended to you. My endocrinologist says to take them 4 hours apart. I take 10mg when I first wake up, 10mg right around noon to 1pm and 5mg around dinner time.

[Skodadet in reply to Amkoffee]

Thank you Amkoffee. I hope you’re doing ok on the hydrocortisone.

[Seraphina56]

Hi. I don’t have an answer to your question I’m afraid, but I am curious to know what a normal morning cortisol should be and whether a GP can do it. I’ve been been reducing Pred slowly for two years and been told for 18 months I have chronic fatigue syndrome, I’m so ill and my life is wrecked with it. I have no symptoms of PMR. My Rheumatologist wouldn’t do any adrenal tests himself and just said let him know when I’d been below 5 mg for two months and he’d consider referring me to an Endocrinologist. So just been referred and found that I could wait months.

I get the feeling that the GP and Rheumatologist are convinced that my fatigue has nothing to do with the Pred. Maybe they’re right. Don’t know. But currently trapped by this awful debilitating condition.

I did a private salivary secretion test which showed my adrenals were completely flat. I sent it to the Rheumatologist last Sept who refused to consider it.

Sorry to hijack your question but it just rang so many bells.

[Skodadet in reply to Seraphina56]

I'm sorry to hear that. My GP did a 9am cortisol test which was in the 200s. The Endocrinologist said that was on the low side.