Stroke vs GCA symptoms which to blame

[Slowday]

I am fighting two battles at once recovering from GCA (July 2019) and a stroke (September 2020) so which to blame for my current symptoms? The numbness down my right side has never eased but is definitely stroke related. However, now they are not sure if I ever had a stroke as CT and MRI scans were all clear and so I have been forced in the last six months to go private for answers. The latest referral is to a neuropsychiatrist as they think my symptoms could be functional as opposed to real so we'll see how that goes. But my question is to those who have managed to successfully wean themselves off steroids. I am down to 2mg of Preds from 60mg two years ago but my tiredness levels are incredible - is this normal? I sleep at least 10 hours at night and usually 2 hours every afternoon and I'm still exhausted all day. I can hardly walk more than 4,000 steps a day and haven't the energy to do anything around the house or garden. I have not suffered any relapses of GCA symptoms and hopefully I will be off steroids in a few months. But when if ever do the tiredness and lethargy go away?

[DorsetLady PMRGCAuk volunteer]

But when if ever do the tiredness and lethargy go away?

Probably when your adrenals are up to speed again...have a look at this post, and if you think that's what is is, then ask for them to be tested - but even if they are capable of working it can take some time even when you are off the steroids for them to be back to 100% function -

healthunlocked.com/pmrgcauk...

But please don't assume that just because you are down to 2mg your GCA has gone, it may not be, so some of the fatigue could be due to the underlying illness. .. it can, and does last a lot longer than 2 years.

[Slowday in reply to DorsetLady]

Ta DL I think I have a rheumy review soon. I'll ask for another synacthen test

[PMRpro Ambassador]

As DL says - once your adrenal function has caught up with the reduction in the dose of pred. And the only answer to that is time and patience. Even a synacthen test only tells you if the adrenal glands are able to produce cortisol when prodded hard artificially. It doesn't mean that they are actually doing it because it is a very complex feedback set-up that has to get into the swing again. Even after stopping pred altogether it is said it takes a year for adrenal function to be reliable.