9am cortisol results

[marionofnorwich]

I started on my PMR journey in 2020. I have been on 4mg of pred for a while now as my rheumatologist advised sticking to that dose long-term (forever) as my adrenal glands were not likely to recover (after a short synthacen test) . However i recently (about three weeks ago) dropped to 3.5mg which seems ok so far. I asked for a 9am cortisol test with this result, less than the optimal 350 at Serum cortisol level 252 nmol/L

Does anyone have any thoughts about my prospects for reducing pred further? Or feedback on that result?

[DorsetLady PMRGCAuk volunteer]

As we say (almost every day on here) the only way to nudge your adrenals into working again is a very slow taper (and I do mean slow) and tiny drops down. .. 😊.

But do watch for any adrenal insufficiency symptoms and seek medical advice if you feel unwell.

Also have a look at related posts…

[marionofnorwich in reply to DorsetLady]

Thank you. I really dont feel any symptoms aa described eg weightloss (i wish) or low blood pressure (same). I do feel more tired but i did used to have an abnormal level of energy and dont feel 'deathly fatigue' . Low mood does crop up and low levels of motivation but still doing more than many people without PMR so i havent given up on my adrenals yet though the Gp (who is sensible) thinks i should believe the rheumatologist Max who is also sensible. I think i will hang about on 3.5 for a while and then try dropping to 3 . Not sure what PMR is doing. I cant disentangle what is what. My mobility is definitely compromised but could be other things

[DorsetLady PMRGCAuk volunteer in reply to marionofnorwich]

Unfortunately at low doses it can be a combination of many things.. 🤦🏻‍♀️

[marionofnorwich]

Yes am resigning myself to that and trying to adjust. Didn't catch your webinar but going to try low carb eating. I dont eat a lot of carbs but it does happen so going to try and concentrate on that. Losing weight will definitely help my knees but it is stubborn. I did three months of intermittent fasting with restricted food and lost two or three pounds last year. Disheartening but will try again

[PMRpro Ambassador]

I think Max is sensible in that he isn't trying to force you to get lower and effectively giving your the choise but personally I think it is too soon to give up attempting to taper altogether.

A result of under 100 would be adrenal insufficiency with little hope. To have a basal cortisol of 250-ish while still on 4mg I think is promising. As I understand the guidelines Polywotsit put up a while ago, endocrinologists suggest the correct approach at this stage for long term pred patients is to taper extremely slowly and check the basal cortisol every so often to see if it is improving.

I think as long as you are aware of the potential problems and the symptoms to watch out for - and your family and friends are made aware too - it is fair enough to keep trying. Perhaps greater awareness is required if you were under more stress than usual or trying to do more physically - and of course if you are ill you really do need to use Sick Day Rules. And if you feel really unwell at any point - don't hesitate to call 999 and say it could be a potential adrenal crisis as you are a long term steroid patient.

[marionofnorwich in reply to PMRpro]

Yes, thanks PMRpro I think that is my approach. I am not going for bravado and I do appreciate that I am not being pressurised - by Max or my GP - to reduce irrespectively but that doesn't prevent me from trying to reduce at my own pace.

[SnazzyD]

My Synacthen test and energy were not very good at 4mg. Much better by 1.5mg, so I wouldn’t be too pessimistic at this point. I had to reduce 0.5mg over 8-14 weeks at this stage.

[Angelsmummy]

Hi m,I had a SST at 4.5 mg,after an hour ,readings were 170 .Endo has said to get down to 5 mg and stay there,but I am hoping ,fingers crossed that when the time comes in the future( had to go back up because of flare),I might try and get lower.Maybe because I am a carer for my husband,they might have thought the 5 mg would be sensible,i,e stress etc but I can only hope that eventually I will get down/ off.If I don’t,then 5 mg will suit me fine.If it keeps me well and safe,then that is good enough for me.Good luck,xxx💐💐😜🤞🏼