cortisol levels

[Glyngin]

after 4 years on prednisone ( up & down)tapering to 5mg in last 6weeks pains returned.Rheumatologist thinks adrenals not working.Suggests a Synacthen Test? Just wondering if anyone has had this & what was the outcome.

Thanks Glynis

[DorsetLady PMRGCAuk volunteer]

Very likely your adrenals aren't working as well as they should be - but that doesn't necessarily mean you cannot reduce Pred - and the pain is more likely to be PMR still burbling along.

If your pain is similar to PMR pain - then it won't be adrenals - sluggish ones cause other issues, mainly fatigue, but also light-headedness, and stomach issues - do you have any of those? see this for more info-

healthunlocked.com/pmrgcauk...

The Synacthen test will only show they are capable of working - not how well.. and many Endos don't think it's worth doing until you get to around 3mg. But if you wish, no harm it getting it done.

[Glyngin in reply to DorsetLady]

Many thanks for your informative reply.I am frightened to decrease below 5mg as I have girdle & shoulder pains & extreme fatigue.

Think I will go ahead with the Synacthen test just to see.Really don’t know what the next stage is?

[DorsetLady PMRGCAuk volunteer in reply to Glyngin]

Sounds like a combination of both PMR and adrenals {fatigue part} ..

Perhaps you should try the flare protocol as 5mg sounds too low - see this link if you haven't used it before - - and then drop back to 6mg or 5.5mg as 5mg is not enough for now. although did see you have been as low as 3mg previously - what happened then?

healthunlocked.com/pmrgcauk...

.. and just checking you are using a slower tapering regime aren't you...as unfortunately you do seem to have a very persistent form of PMR. As slow as you can will help you reduce and help nudge your adrenals as well.

[DorsetLady PMRGCAuk volunteer in reply to Glyngin]

If you mean re adrenals - you’ll have to wait until the results are back. However if you mean your PMR - I gave advice on that in my reply. .. a short burst on a higher dose shouldn’t affect adrenals and test.

[SnazzyD]

You could have a Synacthen test but at 5mg it may well show low activity which is why mine wasn’t done until at 4mg. My Endo said 5mg was plenty for some to suppress their adrenal axis so above 4mg wasn’t a reliable indication of future performance. Mine were not too clever at 4mg but by 1.5mg was much better and continued to improve though it was an arduous road. If the first result had been taken as an indication that there was no further improvement I may well have been kept on some sort of steroid. Instead the Endo said to keep reducing slowly to challenge the system. My low cortisol aches and pains were a generalised fluey ache that wasn’t in specific areas like PMR that people describe. I also had weakness.

DL’s link will tell you about the range of symptoms that come with low adrenal function when the Pred gets below about 8mg. The trouble with this stage of dosing is that you can have a PMR flare along with the insufficiency at the same time. Therefore you have the job of trying to discern whether your pains are similar to PMR. The difficulty comes when someone else tries to tell you what your pains are when they can’t feel it.

[Glyngin in reply to SnazzyD]

Thanks so shall I continue to decrease & just bear it out?

[SnazzyD in reply to Glyngin]

I can’t say. It needs to be decided if it is PMR and if so you need NOT to decrease and if it is poor adrenal function very slow reduction on advice you do decrease. PMR trumps trying to trigger the adrenal glands. If you do have a Synacthen test and it comes back on the low side, you could ask to be referred to an Endo so that the decision is made by an expert, not the Rheumy. As PMRPro says, these are two different issues. The difficulty is that they need different approaches.

My reductions for poor adrenal function from 7mg ranged from 0.5mg per 4-6ish weeks then from 5mg from 0.5mg over 8-14 weeks. All this time my GCA was ok so I didn’t have the worry of the is it, isn’t it? issue. In my opinion slow reductions are king in either case unless there is a clear and present reason not to.

Do you think your pains feel like PMR??

[Glyngin in reply to SnazzyD]

Yes feels like pmr pain.Think I’ll go back to 6.5 (where I last felt ok) & taper 0.5 month.Many thanks for advice

[PMRpro Ambassador in reply to Glyngin]

If you go below YOUR "lowest effective dose" then the symptoms will return however slowly you taper so be watchful. When you flare repeatedly at a similar dose, then that is your body telling you you have arrived.

[PMRpro Ambassador]

At 5mg pred your adrenals probably AREN'T working as they would without pred - however that is nothing to do with your PMR symptoms returning. That will be because your pred dose is now slightly too low to manage the daily dump of inflammatory substances that causes the inflammation and symptoms.

At 5mg it is very unlikely that the synacthen test will show anything other than adrenal insufficiency - but it won't be because there is anything wrong with them but because there is plenty of corticosteroid present in the body and so the signal to the adrenals is not to produce more. Think of it as a bit like your central heating boiler having the thermostat in the same room as you have installed a wood burning stove. While the stove is producing heat the thermostat registers that and the boiler stays off. As the stove burns down, the thermostat is triggered because the temperature in the room is falling. Same idea with the adrenal production of cortisol.

Most endocrinologists say there is no point before 4mg and preferably 3mg. And even then, it won't show much for many patients. But PMR is independent of adrenal function - you can have perfect adrenal function and develop PMR - and vice versa,

[Glyngin]

Thanks .So is your advice to increase yet again or bear it out in the hope it will improve?

[PMRpro Ambassador in reply to Glyngin]

If you have PMR symptoms it is a sign the dose is too low - and if you leave it, it will just get worse if that is the case. You can't bluff PMR, it always wins. If you repeatedly flare at a similar dose that is your body telling you that you have reached your destination FOR NOW; the lowest effective dose. It doesn't mean you won't get lower - just not yet.

[Glyngin]

ok will do many thanks