Is this normal?

[Logic]

I am new and wondering if it is normal to feel exhausted two months after a two year taper off prednisone for PMR diagnosed in December 2018. That and hot flashes are hard to take.

[squashie]

I was diagnosed 2 months before you, started on 15mg prednisalone, and have tapered to 3mg (with one false drop on the way). Apart from a few months when I deliberately sat at 5mg, I've tapered quite steadily. I'm the same age as you.

Given your starting level, which does seem to be very high for PMR, it sounds to me as though you've come off the pred too quickly and your adrenals haven't yet had time to catch up.

When the UK and Europe wake up, I'm sure the experts will be able to advise.

[Kendrew]

Hi Logic. Firstly, welcome to the forum. I would agree with squashie that your starting dose for PMR was much higher than the normal starting dose of 15mg. 50mg, or thereabouts would usually be the starting dose for GCA. From all the knowledge and information I've gleaned here, I would also say that tapering from 50mg to 0mg in 2years, is a very fast taper, bearing in mind that it will take much longer than that for most other people. You don't mention a return of any pain or stiffness, but you may still have some PMR that is still active......or your adrenals may be struggling to 'fire up' again. There are many reasons for fatigue and I know more informed people will be along to give their more expert opinions shortly.

I hope you find some answers to your question and this will then hopefully help you to feel more reassured.

[Logic in reply to Kendrew]

I was at 50 mg of prednisone because the doctor suspected large cell but a biopsy was was uncertain. I do have pain in legs when I walk too long and getting out of a chair or getting up from the floor and stiffness moving my arms sometimes. And I had low sodium for a while early on.

[DorsetLady PMRGCAuk volunteer in reply to Logic]

Uncertain biopsy doesn't necessarily mean it wasn’t GCA....just that nothing showed in the tiny sample taken, but could be elsewhere in blood vessels.

Would agree probably too fast a reduction for your adrenals to reset themselves.

As you know they stop working temporarily when on long term higher doses of Pred - and don’t just switch on like a light switch when you come off them....for some people they can take months to get back to normal production.

Fatigue and hot flashes/flushes can be a sign of that.....but OTOH the leg and arm pains could mean PMR is still active.

You need to talk to doctor about this.

[SnazzyD in reply to Logic]

Hello, does sound like PMR isn’t yet done, plus your adrenal function is probably not tip top either. Two years for both to have resolved is pretty speedy. I started at 60mg (briefly) aged 54 and most of 3.5 years coming off Pred was spent in the last few mg. 1-0mg took a year or thereabouts and I STILL felt the lack of adrenal function.

[PMRpro Ambassador]

So you have been off pred for a couple of months? To feel exhausted after a 2 year taper (which is pretty fast) is to be expected, your adrenal function is likely to take months to sort itself out fully.

But since you mention hot flashes - have you any other symptoms of the PMR returning? The two year tapers are only a baseline - each taper should be adjusted to the individual patient and only about a third of patients get of pred in 2 years. It isn't unusual for even 1mg of pred to be enough to control the build up of inflammation and keep symptoms at bay - but no pred doesn't work for long.

Do talk to your doctor.

[Irishfurbaby]

HiI am tapering off predisoline which is the same affects as prendisone-I felt flat and tired all the time. Then I was advised to take B12 high dosage and Tumeric. I bought Bioglen Tumeric Shot - liquid and a strong B12 tablet and that has helped me immensely. It is worth a go and hopefully you will have the same result.

Good luck