Looking for some advice. I'm into year 11 PMR/GCA and my rheumatologist recently referred me for a PET CT scan as I'm down to 4.5 and in a fair bit of pain( and feel pretty rubbish) which I think is both PMR and Osteo in joints. His thought was it might show up areas of inflammation and and vascular inflammation. He also instigated a 9am cortisol test. The reading came back in the mid 200s? which he says shows normal adrenal function. I hadn't taken Pred. that morning.
Following the scan, I was quickly referred for a sigmoidoscopy which showed up a sizeable rectal polyp which has now prompted an MRI and a colonoscopy over the next fortnight followed by a TEM op. to remove and biopsy. Someone booking me in mentioned sick day rules and contacting Endocrinology but as yet heard nothing back. As the first procedure is due to take place next week, I was wondering when and what if any adjustments I ought to make to my daily pred dose which feels too low . I am waiting to discuss this with the Rheumatologist when we meet to talk about the detected inflammation levels but in the meantime, the bowel procedures have taken over and I'm curious as to know whether a temporary Pred increase is called for.
I know I'll get the best advice here so thank you in advance. Kari🌈🐦⬛
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"The reading came back in the mid 200s? which he says shows normal adrenal function"
Not according to the guidance in the expert guidance that is the basis for the booklet posted about the other day - it shows they aren't dead but you can't say they are really functioning normally on the basis of that.
1. we suggest that the test indicates recovery of the HPA axis if cortisol is >300 nmol/L or 10 μg/dL and glucocorticoids can be stopped safely;
2. we suggest that if the result is between 150 nmol/L or 5 μg/dL and 300 nmol/L or 10 μg/dL, the physiologic glucocorticoid dose should be continued, and the morning cortisol repeated after an appropriate time period (usually weeks to months);
3. we suggest that if the result is <150 nmol/L or 5 μg/dL, the physiologic glucocorticoid dose should be continued, and the morning cortisol repeated after a few months."
Are you having a GA for the colonoscopy? If so, the anaesthetist will look after intra-procedure hydrocortisone to protect adrenal function needs. If not, endocrinologists recommend doubling the dose/10mg if you are undergoing such procedures.
But the bottom line is, if you have pain and symptoms at 4,5mg you are at too low a dose for managing the PMR. I hope the PET-CT shows whether that is the case.
Oh Gawd - thanks Pro - I checked the result and its 286 nmol which the Rheumatologist describes as working normally so pretty near the borderline ?The pain flare has increased since trying to reduce from about 6 mgs Pred to 4.5mgs between March and December during which time the CRP went from around 3 to 9 - not massive I know - much higher figures in the past - but consistent with increase in pain over the same period. (I wonder how generalised the standards necessarily are but will differ between individuals/pain response and the same individual over a decade?)
The colonoscopy won't be GA but the nurse did mention Sick Day Rules but hasn't got back to me but I will increase for the Transanal Endoscopic Microsurgery as you say and possibly slightly for the MRI and Colonoscopy but maybe too much upping and downing.
The rheumatologist phoned following the PET-CT scan and briefly said it showed some spots of inflammation and a small amount of vascular inflammation but the main thrust of the conversation was the polyp which hopefully will be dealt with within the next month.
What I find tricky is the whole will the adrenals work issue - is it worse long term to give them a chance or to accept that they're now shot to bits and take the Pred. needed to be relatively pain free.
If pain and CRP increased while tapering - you have overshot the dose you are looking for: the lowest effective dose, the lowest dose that gives the same relief from symptoms the starting dose did. The numbers are only a guide, the bottom line is symptoms. The markers vary from person to person and there is no level that is OK if you are now getting symptoms.
Even the rheumies are beginning to understand that when the disease flares, it can be totally different from a previous episode. Something we patients have said for over 10 years ...
It is a balancing act - you need the dose of pred you need to manage the symptoms, and if they allow, you taper to a lower and lower dose until you get to the point where the adrenal glands should start to play their part too.
Mmm thank you. On the basis that your figures suggest that adrenals arent dead but not overjoyed and pain is pretty significant and stressful procedures about to happen , I will probs return to 7mgs for a while. Ive ordered some 5s from the surgery so hoping the GP will oblige . Thank you again for invaluable help 🙏kari
You may well need SDR cover for stressful procedures - the most recent Endocrinology recommendations suggest doubling the dose for the day which to me seems perfectly reasonable and won't mean a permanent increase. But if you have symptoms and raised CRP, you need more.
Think I'll increase to 10 mg for the days of the 'explorations' and try and find out how this is managed intravenously (as per SDrs) for the surgery. Thanks again
SDRs aren't intraveneous steroids - i.v. is only peri-operative, adrenal crisis is injections of hydrocortisone. SDRs are still oral steroids but a higher dose: double your current dose up to a maximum of 20mg total dose for the duration of the illness or one-off for certain procedures.
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Rheumatologist thinks I might not have PMR
Disappointed 
Sick Day Rules
Prednisolone and Osteoporosis 
