? Increase Pred dose

[Francesbarbara]

PMR diagnosed over three years ago. Fortunate to not have big flares and after very slow tapering am at 2.25mg. I have at least six of the symptoms of adrenal insufficiency, the worst being fatigue, low BP (it is usually low anyway), dizzy turns, slight nausea, lack of appetite, dull headache and generally feel most unwell. I am trying hard not to increase the dose of Pred as that will slow the adrenals up even more, but when you get to a rather desperate stage it is very tempting. Am I better to increase it by very little - say 1 mg or take a higher dose - say 5mg - and for how long? Any advice gratefully received. Don't think my age of 82 is helping.

[PMRpro Ambassador]

I think it depends on where you are and where you feel OK. If you can't cope with everyday tasks at this dose - was 2.5mg of 3mg better? If so, I would go to the lowest at which you could cope and stick there for a couple of months and then see if 2.25mg is OK. 2.5mg should be plenty low enough to encourage adrenal function to get going and more reliable.

The other thing I would do is ask the GP to do a basal cortisol - blood level taken between 9am and lunchtime without having taken your daily pred yet. That will show if your adrenals are beginning to do anything and show if it is worth doing a synacthen test.

In your 80s there is always the chance your adrenal glands aren't doing much anyway and if that is the case, there is no point at all trying to drag yourself through the day if it isn't going to result in normal adrenal function at the end.

[DorsetLady PMRGCAuk volunteer]

Ditto to PMRpro's comments...and if an extra mg or two gives you better QOL - then go for it...

[SnazzyD]

I agree with PMRPro. I would ask what you do in your day today life. I had to pare my life right down to avoid feeling ill until my adrenal glands adjusted. A test would be useful as explained. I had one at 4mg and 1.5mg and there was an improvement from so so to pretty good if I didn’t over do it.

[Francesbarbara in reply to SnazzyD]

Thank you all for the very helpful replies. My Dr has also suggested a test which I am very happy about but there is quite a waiting list. Meanwhile I'll put it up to 3mg as I was more comfortable then. I note PMR Pro's note about age and totally agree with advice to not struggle on if a waste of time. I would just accept the situation.

[PMRpro Ambassador in reply to Francesbarbara]

There will be a waiting list for a synacthen test as it is done at the hospital but he can do the basal cortisol test - it is just an ordinary blood sample and will provide a lot of information.

If he isn't familiar with the concept give him this paper to read

pubmed.ncbi.nlm.nih.gov/286...

[Francesbarbara in reply to PMRpro]

Phoned surgery, asked for basal cortisol test and can have it done tomorrow. Perfect, thank you.

[PMRpro Ambassador in reply to Francesbarbara]

Do tell us the result when you get it!

[Francesbarbara in reply to PMRpro]

Very surprised to get a result of 493. Over a year ago it was 275. Makes me question why I was feeling so bad on 2.25mg. . Have been on 3mg for past week and feeling so much better and will start a slow reduction tomorrow. Thanks again.

[PMRpro Ambassador in reply to Francesbarbara]

Excellent! It shows they are working and producing cortisol - it doesn't mean they are doing it reliably and consistently and it is said that can take up to a year to settle down even after stopping pred altogether.

[piglette]

I must admit I did increase my dose by 1mg in the end as the deathly fatigue became too deathly for me!

[Francesbarbara in reply to piglette]

You obviously understand how I am feeling!

[piglette in reply to Francesbarbara]

I did feel a bit of a failure increasing by 1mg but I really was non human!