Weakness 3 years post PMR diagnosis. Adrenal problems?

[StaffsJM]

Can anyone please help me. I am a fit 61 years old. 3 years ago I was diagnosed with PMR and started on 20mg prednisoline. I have been trying to slowly reduce ever since. Have had a couple of set backs when I pushed reduction too far, but I am sensible and reducing extremely slowly. I have been on 5mg for quite a while now and thought I was doing well. However over the past week or so I have felt so ill I don't know what to do. I am dizzy when I turn my head, night sweats which are worse than the menopause (i didn't think that was possible!) And I feel so weak and shaky. I am even struggling to muck out my horses and do all the usual things I have been able to do even with PMR. Could it be that my adrenal glands are not working properly? I keep reading here about Addison, Cushings etc ... Which would be ironic as my horse has Cushings!. I'm usually able to pick myself up and be strong but I'm getting quite scared by just how dreadful I'm feeling at the moment. Any help or advice would be very welcome. Tests for adrenal function ?. Thank you.

[jinasc]

Yes, a Synacthen test would be very useful.

Put an appt on asap with your GP and ask for one and tell him why and also about the fact that you are so unwell. Just like you have written here.

[StaffsJM in reply to jinasc]

Thank you

[PMRpro Ambassador]

Your adrenal glands are not working as they normally would simply because you are still on enough pred to mean they don't have to work at full capacity. Don't get too hung up over adrenal function.

Just as your central heating boiler doesn't need to churn out more heat while the wood burner in the room with the thermostat is lit your adrenal glands receive signals via the HPA axis (hypothalamus/pituitary/adrenals) telling them there is adequate corticosteroid in the body to perform all the functions that require it - it isn't fussy whether it is natural cortisol or pred in a tablet, both can do the same thing. Only when the pred dose gets to lower than about 7mg or so, not a fixed amount and it varies from person to person depending on the demands you set. Top endocrinology experts in London recently said they think as little as 2 or 3mg pred is enough to function normally - not sure if they had asked people who live with the problem of regaining normal function!

Anyway, once you are at the level you are at, the adrenal set-up should start to produce a top-up amount of cortisol but return to function isn't instant and takes time to get going and probably tends to over or underperform in the meantime, swinging about like a swing that has been pushed violently until it settles down to a better rhythm.

Cushings syndrome is due to the presence of excess corticosteroid - in our case the tablets we were taking, nothing to be done except reduce the dose of pred we take but that isn;t as easy as some might think. Cushing's disease is a different matter, it is due to the production of too much natural cortisol - and the source must be found as it is abnormal, possibly a tumour but also not just in the adrenals themselves, it may be somewhere in the signalling system that things have gone wrong.

It could be adrenal insufficiency - but it's not that likely you would feel that unwell while still taking 5mg unless you really don't absorb a high proportion of your oral dose or you are simply asking your body to do too much. What is also a possibility is that your PMR is flaring because you have achieved a dose that is just slightly too low to keep the inflammation under control. Or even that the underlying cause of PMR/GCA is playing a dirty trick and cranking up its activity causing a flare.

Or even you have caught a virus/other infection - havign PMR and being on pred doesn't excuse you from getting other illnesses.

Whatever, time to see the doctor, A synacthen test won't tell you a lot before 3mg, have it sooner and you will probably be told it is inconclusive and to get another at 3mg. But you need to be checked for other options - if only because you have been doing fine at 5mg for some time and you say this is a relatively new situation over the last couple of weeks.

[StaffsJM in reply to PMRpro]

Thank you very much for this information. It is very helpful

[sondya in reply to PMRpro]

So informative and explained beautifully! Had to copy and paste to a place offline so I can refer to often. Currently on 5mg with just a niggly upper-arm pinch but your summary makes so much sense, I am not worried. Thank you, Eileen.

[SheffieldJane]

You need an urgent referral to an Endocrinologist. In the meantime I would ask my GP about increasing my Pred dose. A Synacthen Test will show whether your own Adrenal glands are capable of producing Cortisol. I have been through this and found to be deficient in Cortisol, but I didn’t feel as bad as you describe. You are working very hard and possibly running on empty.

[StaffsJM]

Thank you, you may be right. Horse riding, mucking out etc is very hard manual work. Perhaps I am asking too much of myself.

[Hidden in reply to StaffsJM]

I would agree with you... In year 4 was at 6mg and increased due to flare. I couldn't muck out anything without feeling rubbish. Winter on it way. You need to get into top notch condition.

[Constance13 in reply to Hidden]

What's that "top notch condition"? Is there anyone "suffering" from that on this forum????😂😂

[Hidden in reply to Constance13]

🤣😂🤣😂 I did consider speech marks....

[DorsetLady PMRGCAuk volunteer in reply to Constance13]

Not many!!

[Longtimer]

I have felt pretty much just like you these past weeks....went to GP yesterday, had a load of blood tests today.......doctor said because I'm at 7ish...couldn't do test for adrenals...will when I'm at 5mg.

Feel week as a kitten today..very blurred vision.....awful.....

Will post if any results from blood test...

Keep us posted yourself.....

[PMR2011]

You have been given good advice. I had similar symptoms and it turned out I was profoundly hyperthyroid. You need to see a physician and have a thorough look review. Hope they figure it out soon.