Advice on cortisol levels

[Treetop33]

Hello all!

I've just had a morning cortisol test on 4.5mg prednisolone (down from 5mg recently which I've been on for about six years now). The result is 132 nmol/l.

I know there are pred experts here - is this result a sound basis for further reduction? I'm going ahead anyway, very slowly, but feel pretty chuffed I've got down to 4.5mg so far. Not been able to do that before now.

Am I right in thinking it would be wise to get down to 4mg and then do a Synacthen test to be sure?

Ta! Hope everyone is warm and storm free now.

[PMRpro]

You won't get very reliable results at this stage on 4,5mg pred - but if you have a basal cortisol of 132 nmol/l while in 4,5mg pred that is pretty encouraging since 4.5mg is plenty to still be suppressing cortisol production.

If it were me, I'd take that as a baseline and continue tapering VERY slowly and get basal cortisols done every so often to see if it rises, even if it is only very slowly. If you can get to 3mg it is probably worth then asking for a synacthen test to see if there is any reserve capacity when the adrenal glands are kicked hard chemically. That still isn't a guarantee that the whole set-up is capable or responding reliably in day to day situation - but it can take up to a year after getting off pred altogether for that to happen.

One of the ladies on the PMRGCAuk forum got a pretty so-so result at 3mg but by 1,5mg it was looking much better and she went on to get off pred altogether.

[Treetop33 in reply to PMRpro]

Thank you so much - that's really helpful. That sounds like a plan. Yep I'm going very slow, especially as I have a new job (I reckon if I took a year off I could do it). It seems I have a way to go yet! x

[PMRpro in reply to Treetop33]

The PMRGCAuk forum is the place to come for advice about the long, slow process of pred tapering - we welcome anyone we can help.

[Treetop33 in reply to PMRpro]

Thank you - I joined before but left I think. I've tried various ways of doing it but what seems to work for me is .5mg drop one day in a week, then two days etc. I maintain if I'm feeling a bit iffy, then start again. This time I've not had the joint pains etc. I normally get. I don't know why!

[PMRpro in reply to Treetop33]

Just drop in any time if you have a question. Does one have to join a group to post?

[DorsetLady in reply to PMRpro]

Yes… you can read posts on other forums, but to answer or post you have to join.. but it’s easy to do and to leave afterwards ….

[DorsetLady in reply to Treetop33]

You can easily rejoin - but you can read posts without having to do so - have a look at this from our FAQs -

healthunlocked.com/pmrgcauk...

[Treetop33 in reply to DorsetLady]

Thank you!

[Spanielmadlady]

Can't help with your question treetop but just wanted to say well done for getting down to 4.5mgs.im envious lol as I'm currently stuck on 7.5mgs . Hope the tapering continues to go well. Sml xx

[Treetop33 in reply to Spanielmadlady]

Thank you! I think this is the first time I've managed it. Not sure what's changed but I am on a histamine control regime which deals with many symptoms I have. Best of luck with your reduction. Keep well and rested, and keep trying xx

[Spanielmadlady in reply to Treetop33]

I had tacrolimus added to my meds to help with my pred reduction but I've been off it for several weeks in order to have a surgery on my ankle so I'm not dropping just now until ive been back on it a few weeks. I can assure you im well rested as im in plaster for 6 wks non weight bearing. Its quite some time since I was on 7.5mgs and i can't get below 7mgs so I'm approaching my tipping point 😱 x

[Treetop33 in reply to Spanielmadlady]

Golly yes surgery not a time to start reducing! Good luck xx

[lupieibbie]

I'm so pleased for you that you've got down to 4.5mg. Am I right in thinking that you've been taking 1x2.5mg + 2x1mg tablets?

Sorry, if that sounds like a daft question but my Rheumatology folk are insistent that I continue on 5mg forever, as a "maintenance dose", which is never open for discussion. I suspect that it's a case of (financial) convenience as monitoring below that dose requires cash!

Can I ask which part of the UK you are in? How do you access an Snyacthen test? On the NHS?

I'm sorry that I've inadvertently made this post 'all about me' but I'm so frustrated to have been kept on any steroids for the last 11 years with no hope of ever getting off them completely, that I'm desperate for any answers.

I wish you all the very best with your journey and thanks for any help you can give.

[Treetop33 in reply to lupieibbie]

Yes I'm on 2.5mg and 2 x 1mg gastro resistant tablets. I'm afraid you just have to insist.

I'm in Gloucestershire, and connected to Bath rheumy. They are very insistent I come off steroids. They'd prefer me to be on methotrexate than steroids.

If you feel well enough, insist.

[lupieibbie in reply to Treetop33]

Thanks Treetops. I just need to strap on my big girl pants and go for it! 😁

[PMRpro in reply to lupieibbie]

You could start by asking your GP if they would do a basal cortisol level - that is cortisol done on a blood sample taken between 8am and lunchtime - timing isn't that critical for this. It just needs a blood sample which the GP practice can do. If the result is under 100 nmol/L, you are definitely adrenally insufficient. If you are above 450nmol/L, you are almost certainly fine. In between is equivocal and then you would need a proper synacthen test to clarify.

I'm not sure if a GP can request a synacthen test - it must be done at a Day Clinic at the hospital and not at the practice but they may be able to order one. You would have to ask them.

Normal values for a blood sample taken at 8 in the morning are 5 to 25 mcg/dL or 140 to 690 nmol/L

[lupieibbie in reply to PMRpro]

Thank you So much PMRpro, that's really helpful advice. When I get my va va voom back, I'm so going to do that. Half the battle with this exhausting condition is knowing the right questions to ask and so thanks again. This gives me hope 😁