Adrenals

[diana1998]

I have dropped down from 5mg to 3mg in halves really easily.. No pain or side effects. But I feel very tired. I know it's the adrenals getting to work again but the lack of energy is very frustrating. From 5mg I've been staying on the new dose for 8 weeks. At 5mg I had a synacthen test proving there's no reason why the adrenals can't get working. Should I get another test done? or put up with the lack of energy and hope it passes. I'm due to drop to 2.5mg soon. When entertaining or out busy with friends and distracted I don't notice it so much. I go to bed pm for an hour and feel much better after the rest. I'm really careful with good diet, in bed by 10pm etc. Would appreciate any advice please.

[PMRpro Ambassador]

If you have had a good synacthen test result already I doubt that will change. But all it shows is that they CAN produce cortisol not that they are actually doing so reliably. That will take time - and it is said it can take up to a year even after stopping pred altogether. I think it is patience time, possibly slow the reduction even further and just wait it out.

[diana1998 in reply to PMRpro]

Thanks very much.

[DorsetLady PMRGCAuk volunteer]

Have a look at this post - and be patient!! Difficult I know 😉

healthunlocked.com/pmrgcauk...

[diana1998 in reply to DorsetLady]

Many thanks. I'm my own worst enemy as I've unavoidably had people to stay, taken them here and there, hosted lunches and a ladies supper and feel totally worn out. I am just finding it more difficult than usual. It's after lockdown now life has speeded up. I'm sure the lockdown helped me sail down easily from 5mg. I do intend to stay much longer on each dose when under 3mg like Professor Dasgupta advises. I hate feeling a total wimp!! But it has to be borne I know. But not a twinge of pmr pain at least.

[DorsetLady PMRGCAuk volunteer in reply to diana1998]

Took mine about 8 months to really get going again - like you no pain (GCA) just random bouts of fatigue. So just kept going with slow taper- day by day….but it does get a bit frustrating!

[diana1998 in reply to DorsetLady]

Oh well, at least there's light at the end of the tunnel.... Maybe! 👍 My cousin with GCA is also on 3 and she can hike miles with lots of energy, whereas I measure my exercise in steps!!

[PMRpro Ambassador in reply to diana1998]

Mmm - but GCA often doesn't affect the muscles at all.

[diana1998 in reply to PMRpro]

Yes that's true. I just thought the steroid dropping would effect the adrenals hence fatigue too?? She goes entirely on blood results to drop whereas I go on symptoms with normal bloods all the time.

[PMRpro Ambassador in reply to diana1998]

The steroid dropping is what should trigger the adrenal glands to produce cortisol to top up the pred to the physiological level, mostly said to be equivalent to 7 or 8mg pred. Above that dose the adrenal glands are signalled that no more is needed so that part of the adrenal glands hibernates. When the total corticosteroid level is low, wherever it comes from, it may cause fatigue amongst other symptoms.

You are right though - symptoms should always trump the lab results for ESR and CRP. Them being "normal" does usually mean the pred is doing its job but in some people they can lag a long way behind the reduction allowing inflammation to start to build up - so symptoms are a warning to watch out.

[DorsetLady PMRGCAuk volunteer in reply to diana1998]

Once the initial diagnosis is made (although that’s not always as straightforward as we’d like) I think recovery from GCA on its own is easier than PMR.

And don’t compare yourself to others - we are all different!

[diana1998 in reply to DorsetLady]

Very true. I think she thinks we are in competition 🤔 No we're not!!

[DorsetLady PMRGCAuk volunteer in reply to diana1998]

No you’re not - and GCA and PMR although similar- are also very different.

[borednow in reply to diana1998]

Ah, but is she the hostess with the mostest 'cos it sounds as though you are - I'd like to book in please. Please slow down and take care of yourself. Softly, softly and all that.

[diana1998 in reply to borednow]

Only one person on Saturday night, then finished!!! 😂

[borednow in reply to diana1998]

Excellent. And relax .............................

[diana1998 in reply to borednow]

👍

[piglette]

I had dreadful fatigue from adrenals. I did hang around on doses until the tiredness improved a bit.

[diana1998 in reply to piglette]

👍👍👍

[Hidden]

Hi I am not sure how long fatigue lasts for. I stopped pred after 10 months I have been off meds for 14 weeks now and still get tired my tests are all ok so I am hoping things will get back to normal in due course. I would say my energy level s are about 60, % the old me. Good luck

[jazzgirl80]

I have recently dropped to 2.5 mg, I was very tired, but now take vitamin c and zinc and iron tablets which has made a huge difference

[diana1998 in reply to jazzgirl80]

That's good. I take those but not iron as levels normal.

[jazzgirl80 in reply to diana1998]

Iron can help combat the fatigue, my iron level is within range but might help to give u a boast

[diana1998 in reply to jazzgirl80]

Thank you

[123mossie]

Hi Diana I got the same as you at that dose, fatigue & no energy. I'm down to 2.5 now using dsns & energy is coming back & no fatigue. I'm continuing to creep down to 2. You'll get there when your adrenals decide its time to work!

[diana1998 in reply to 123mossie]

👍Hope on the horizon. Also not half so busy now which is helping