The return of the awful fatigue ?

[MrsMac03]

Hello

Just a very quick post. I'm down to 1mg pred. now (just last week reduced down from 2mg to 1mg) and so far no return of the dreaded pain. However I do feel as though the awful "fatigue" has returned. Has anyone else experienced this on such a low dose of pred. and will it last?

Thank you

Blessings xx

[markbenjamin57]

Greetings MrsMac, interesting to read your post.

First, I must stress that I'm NOT a medic so I can't advise you from a professional point of view.

That said, I can relate to your experience with the on-going DF (Deathly Fatigue) even if other PMR symptoms have subsided - and even at very low levels of the Preds.

My best 'take' on your situation - and from recent personal experience - is that, you might be nearly out-of-the-woods with the Preds, but the body's 'normal' physiological / hormonal balance (HPA Axis and all that?) is still working itself out and finding some equilibrium after a long lay-off due to the artificial input from the steroids.

So, you probably just need to roll-with the fatigue and continue to pace yourself energy-wise in the meantime. I'm sure the Aunties (experts) here will have the same view, but they are the REAL experts on all things PMRGCA

Hope this helps!

Best wishes

MB

[MrsMac03 in reply to markbenjamin57]

Thank you x

[DorsetLady PMRGCAuk volunteer]

Hi MrsMac03,

As Mark rightly says, it's just your body trying to adjust to life with almost(!!) no Pred. It's just a matter of time, and patience, and even more pacing, I'm afraid to say!

Many of us have been there, and yes it does eventually go, you have to hang on in there in the meantime.

So long as you have no return of pain then you're on the last leg - metaphorically and almost literally!

Next drop try 1mg to 0.5mg, but don't be in a hurry!

[markbenjamin57 in reply to DorsetLady]

Thanks DL

I always try to reply to others' posts and queries here from a personal experience rather than a professional perspective.

[DorsetLady PMRGCAuk volunteer in reply to markbenjamin57]

Hope I do as well! As you know I have no medical training- only a patients view & experience. Unfortunately too much of that in regard to GCA☹️

[kellykel in reply to DorsetLady]

Just a note to tell you how much your posts to everyone and me (really in bad suffering from GCA - 'course now everyone thinks it's probably something else and they have me tapering off pred to do a biopsy).

You always respond so compassionately, thoughtfully and pretty darn quick to everyone.

I learn so much from you as a fellow GCA (at least, symptom-wise for me) sufferer.

And you live with the loss of one eye's sight.

Amazing.

Thank you for all you do on this board.

[MrsMac03 in reply to DorsetLady]

Thank you x

[Nitrobunny]

You're so close!!!! Yay!!! Hang in there! 💕💜💕

[MrsMac03 in reply to Nitrobunny]

Thank you - I am completely determined to get through this and beat this shi**y illness. It's had control of my life for long enough and now I want my life back! Be gone you evil PMR!! I am masterful! I am well! I AM well!! xx

[Caro12line in reply to MrsMac03]

Hi MrsMac. Hang on in there. Don't rush the last hurdle. I'm down to 0.5mg going on zero. And yes the fatigue still hits. I think it will even through the early days of the zero club. Our bodies have taken such a battering with high dose long term Pred. We need time to adjust and get chemical balances back in sync. Good luck xx

[MrsMac03 in reply to Caro12line]

Thank you x

[PMRpro Ambassador]

This fatigue is your adrenal glands being a trifle tardy in their staged return to work. Reduce slowly enough and it will improve. While you are on above about 7mg pred they didn't have to do anything. Now they do. It will take about a year after you are totally off pred for their function to be reliable - that is why you are supposed to carry a steroid card - your response to stress of any sort, including trauma or infection, may not be ideal and medical staff need to know you were on long term pred.

[MrsMac03 in reply to PMRpro]

Thank you x

[MrsMac03]

Thank you bucky2.

I walk 20 -23 miles per week and swim 2-3 times a week (500 metres a time) Now I'm starting to feel so much better I'm hoping to build in time on my cross trainer and get back to yoga too - but I'm wary of overdoing things especially with this new bout of fatigue! Onwards and upwards!!

:-)))

x

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