Should I be feeling so tired?

[Mischevious]

GCA returned in January and was quickly got under control with Prednisolone. 60mg to start with and then reducing. Everything has been fine and as I remember from the first time until now. Last Saturday, following the Rheumatologist's advice. I reduced from 20 mg to 17.5 mg, having been on 20 mg for two weeks. I am now experiencing a situation that I have not had previously, I feel fine when I get up in the morning but within a couple of hours I am completely wiped out. I do not have any other symptoms so am wondering if it is just a question of getting used to the lower dose. Last time I reduced following the system suggested by PMR Pro so wonder if that would work for me again although I have not kept details. Any advice or details of experienced will be much appreciated.

[SnazzyD]

Hello. Withdrawal can make one very tired but also, don’t forget the 60mg got the abnormal inflammatory load under control but the autoimmune part is probably still alive and kicking.

[DorsetLady PMRGCAuk volunteer]

To get from 60mg to 20mg in two months is virtually supersonic tapering!

Everything might have been fine, but I would suggest now the fast taper is having its affect - you've gone past the dose your body actually needs, and the fatigue is possibly the first symptom to show.

It may just be steroid withdrawal, but if it lasts any longer than 3-4 after your reduction -

it's likely to be too low a dose.

If you're in that situation I would go back to 20mg, stay on 3-4 weeks and then see how things are. ... maybe trying 1mg reductions from now on.

[Hidden]

Hi, it could be that 2.5 in 2 weeks is a bit much at the moment. Was fatigue your steroid withdrawal symptom when you tapered before? The tapering plan is in the pinned posts.... Though t you might appreciate the link... Though it might be worth looking at some pinned posts to see if you see anything that helps.

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

healthunlocked.com/pmrgcauk...

for the details of the DSNS taper.

If it were me I'd try going back to 20 and reducing 1mg at a time. Did you really need to go back to 60mg for the flare? If so - that is equivalent to being back at the start and on that basis getting from 60 to under 20mg in 2 months is a very fast reduction and your body is probably not quite catching up with the changes.

[FnF36]

My GCA was diagnosed in November 2019 and I have travelled a journey of 40mg > 60mg > 50mg > 40mg > 30 (current dosage). I continue to feel tired, some days moreso than others. Most afternoons I can sleep for between 30 minutes and 2.5 hours - regardless of book, radio or tv! Night sleeping continues as an unknown adventure - some nights no more than an hour at a time, others up to four hours at a time.

So yes, I continue to be very tired and fatigued but try to take each opportunity to rest and recognise what my body and mind is telling me.

I hope that helps and I wish you well in finding an acceptable balance. If you would like the titles of books etc to fall asleep to, just let me know!

Take care and keep safe.

[Jackoh in reply to FnF36]

I find I can fall asleep with any book!! The best for me is listening to something like Agatha Christie on the radio. Each episode I have to listen to twice. It’s amazing that you can think you’re listening with the occasional nod off and when you listen again ,for me, I’ve retained about 25% if that!!