How to gauge level of fatigue... is there any normal?

[Dochaz]

I've tapered successfully so far from 40 gm to 9 gm of Pred for GCA/LVV with PMR symptoms too before treatment. Since going below 11 gm I've noticed an increase in fatigue. Not as bad as before dx, not UNable to walk for an hour and a half or go for an e-bike ride, but it takes more out of me than at higher doses and I need a rest day afterwards. Sometimes 2.

Is this to be expected as I taper? Adrenals not yet active and less Pred??? Or maybe just the normal aging process... not getting any younger, obviously, as the journey goes on. I'm hoping it's normal and not a flare alert.

What has been your experience re fatigue as you tapered?

Have a good weekend everyone

[DorsetLady PMRGCAuk volunteer]

Hi,

Maybe reduce your walking a little - hour & half is quite a lot….and no point if it wipes you out for a couple of days..

Shorter walks and bike rides for while, and then build up again, but slowly.

Just watch out for any other symptoms that might indicate a flare…and act on them as necessary.

[piglette]

If you are able to walk for an hour and a half and go for bike rides you must be pretty active. If you have to rest afterwards I would say that is not unreasonable. We are all getting older.

[PMRpro Ambassador]

Some people get the adrenal effect at higher doses then others. Have you tried splitting the walking into two shorter walks? That can often make a difference. I could manage a lot further by walking to a restaurant, having a leisurely lunch and walking back ...

[Nextoneplease]

Hi Dochaz 😊

I too have PMR and GCA (diagnosed March and June 2021 respectively, was at 40mg last June and am now on 10mg. Fatigue is my main problem and has got worse over time. Currently I can walk for maybe 15-20 mins, rest, then make my way back ( and that feels like a LOT). As PMRpro suggests, I find I need to split up these bouts of activity and get plenty of rest in between. It’s very frustrating but I have no option.

I wonder whether I am one of those for whom adrenal issues kick in early….I don’t know. I just do what I can.

Good luck to you, we’ll get there in the end 😊xx

[Heron82]

Good morning, I have just started on 9.5 mg and after a week feeling fine I’m now having similar experiences. Yesterday walking the dogs my legs were aching and stiff, gait plodding and pace slow. Awoke in the night by them aching and heavy. Hoping things will resolve by resting a little this coming week. Taken so long to get to 9.5 mg I don’t want to give up.

[PMRpro Ambassador in reply to Heron82]

But don't push your luck!