Fatigue

[Judyta]

Besides the crazy teeth.... I have found that fatigue/ weakness ( it's not really tiredness ) fatigue is sometimes overwhelming .

Anyone else?

Thanks

[Celtic PMRGCAuk volunteer]

Overwhelming fatigue which hits 'out of the blue' is a very common and very much complained about problem with PMR and GCA. It is caused by both the inflammation of the disease and a side effect of the treatment. It will improve as you reduce down to the lower doses.

[PMRpro Ambassador]

Fatigue is part and parcel of almost all autoimmune disorders and is the main reason for the fuss we make about resting and pacing yourself to achieve the maximum out of your day. For some people fatigue goes with pred - if they aren't bouncing off the walls with pred mania! Put the two together...

[jaida]

Hi. Yes I am experiencing similar symptoms of fatigue like yourself and call it my 'melt down's. I find it varies from day to day and try to avoid making long term plans. I have only recently been diagnosed with GCA so realise its a long road ahead.! Janet

[Celtic PMRGCAuk volunteer in reply to jaida]

Janet, I well remember that after the few days of euphoria on 40mg, fatigue set in and there was never any warning when that it was about to hit. There was no fighting it, and I remember simply crashing out after a meal at a friend's house. If you are experiencing it that badly, I just wanted to let you know that it will improve as you reduce the dose - I hope the improvement happens sooner rather than later.

[jaida70 in reply to Celtic]

Hi Celtic. Thanks for your comments. I have just started reducing meds to 40g per day and do feel the fatigue is becoming slightly less so fingers crossed provided my esr's are still down I may not feel so exhausted.

[piglette]

The teeth probkem seems to have gone away now I have reduced the pred, I used Sensodyne when I had the problem though. I still have the fatigue although that does not seem to happen so often, but that may be because I am managing it better. It is rather like being hit by a train though when it comes.

[Hidden]

Me too, absolute 'hit you like a train fatigue' but really only noticed it since March now I'm down to 7mg!

It can last a few hours or several days & I get pain in my muscles but not like the pain of PMR back at the beginning!

Saw my Consultant yesterday & she's really pleased with me in general as down by 10mg in 12 months to 7mg & lost 2stone of Steroid Weight! She's checking my thyroid levels & Vit D again but wants me to keep a note of the Fatigue & not rush the reduction, only by 0.5mg & stay on each dose for up to two months & only then if doing OK start to drop, I use the gradual reducing method as many on this Forum do, alongside Methotrexate which I've been taking for 12months since I've been seeing this new Consultant. Just hoping this will improve soon!

[PMRpro Ambassador in reply to Hidden]

Yes - as soon as I started reading your post I was just going to say SLOWER than slow now at 7mg if you are suffering fatigue. This is the point your body has to start producing its own top-up of corticosteroid and it can take a long time for the entire endocrine set-up of hypothalamus, adrenals, pituitary and thyroid and its feedback system to settle down properly. One of the signs of an adrenal problem is fatigue - lots more but it is probably the first.

I've heard others say the same - "But I'm tired now I'm on a lower dose..." and discussed it with one of the top PMR people in the UK and she agreed that did make sense. And an endocrinologist suggested it too and he should know!

[Hidden in reply to PMRpro]

Thanks PMR PRO as always, sound advice. Thank You

[optimist-ok]

Yes, extreme tiredness when I've done too much! 'Too much' can be very little compared with what I used to be able to do. So frustrating but something we have to allow for & live with. Some times its just not possible to do the allowing bit but then I suffer for the next day or two. Take care.