SDR when you are off pred

[Phoebenooby]

Following on to my previous post…. I’m at 4.5mg …. When I eventually get down to zero 🤞🏻 how will I know if my adrenals are back to normal. I don’t get any interaction from my GP an although I know there is a test they can do. I just wondered if I was at zero then fell ill, would I take some Pred incase my body couldn’t fight the illness?

[piglette]

It can take up to a year after you stop taking pred for your adrenals to get back into full working order. If you fall ill when you have stopped pred, it really depends what is wrong. Pred does not fight “illnesses” as such, it helps to suppress inflammation. If it is because the PMR is still not in remission then you would need to go back on pred.

[PMRpro Ambassador]

In theory, the SDRs and a rescue dose of pred should be considered for a year after finishing pred. In practise - I suspect the average GP would look bemused! Unless they are experienced and have met an adrenal crisis patient face to face.

I was watching a GP programme the other day where a long term Addison's patient turned up looking like nothing on earth, The GP's reflection on it was how panicked she had felt - the paramedics who were called just flipped out the hydrocortisone injection required and took the patient to hospital where she went straight to ICU. My paramedic daughter had a similar experience during an asthma attack - GP hadn't a clue, but called an ambo. When her colleagues arrived they immediately asked had she had the asthma rescue medication - the GP looked non-plussed and admitted it was in the fridge but they didn't know the dose!! The ambulance driver, not even a qualified technician, sang out the dose immediately. It makes you wonder ...

But there is a while until it will figure for you - and you can ask for a basal cortisol do be done at 9am-ish in the morning which will give some indication of what is going on with recovery of adrenal function. We know about it even if your GP doesn't ...

[Phoebenooby in reply to PMRpro]

So if I fell ill after I had finished with pred, I should take a 15mg rescue dose for 7/10 days? No one at the GP ‘s have said what to do when I get off pred….theyare unlikely to even know!

[PMRpro Ambassador in reply to Phoebenooby]

No, not necessarily. SDRs are usually for being confined to bed ill or needing antibiotics for example and are mainly based on doubling you dose up to a maximum of 20mg. I'm not sure what the instructions are post-pred - would have to check with an endocrinologist.

Most people never experience the situation - and mostly you can get through without, But one lady was under instructions that if she felt REALLY unwell, she should take 10mg and get immediate medical advice. The immediate medical advice is the important thing,

[Phoebenooby in reply to PMRpro]

Thank you , up to a year is a long time until you are out of the woods…

[PMRpro Ambassador in reply to Phoebenooby]

The situation shold improve steadily throughout that time and often faster than that.

[SnazzyD]

If you are getting through a day without any low cortisol symptoms you know that your adrenals are working. However, what you can’t know is if they will pack out the required cortisol if you need a large amount or sustained greater output. This us why for a year after stopping Pred you need to take spare Pred with you at all times. I didn’t stop for about 3 years.

My adrenal glands took a long while to recover and getting to zero was a trial. Saying that, I didn’t pop Pred just in case assuming a crisis was imminent if I had to deal with anything out of the ordinary. My reasoning was that given I was doing ok, relieving my adrenals of having to work in extremis by adding Pred, was not going to help the adrenal axis work by itself. If I was at high risk of adrenal crisis I would not have taken this approach.

I just got used to the signs that I wasn’t making enough and if necessary took a few mg and then went to bed and did not exert myself. The problem was that it was unpredictable so I was able to get through illnesses, accidents, stress with no issue until on a particular day I didn’t. I got to know what my risks were, protracted periods of pain particularly. My last bad one was 2 years (2.5 years ago) after stopping Pred I had covid badly and 6 days after intense throat pain and fever that sat between 38.5-40c I collapsed. As PMPPro said the ambulance people knew exactly what to do, hydrocortisone IV.

[DorsetLady PMRGCAuk volunteer]

Others have replied - but have a look at this - contains info on signs to look out for on adrenals - and what you may or may not experience . You may not have any issues, but just be aware and know what action to take if you do - as has been explained

healthunlocked.com/pmrgcauk...