why am I so tired: I was diagnosed with GCA in... - PMRGCAuk

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why am I so tired

Ambatu profile image
12 Replies

I was diagnosed with GCA in November. I have been reducing Prednisone every 2 weeks. I started on 40mg and I am now on 12.5mg. I have steroid induced diabetis and my readings have been very erratic. They seem to be settling down a bit. I am taking 160mg and 80mg of Gliclazide, I have also been prescribed 500mg of Mettformin and been taking them for 5 days. I have knocked the 80mg of Gliclazide off as my readings are too low in the morning.

Why am I so lethargic. is it anything to do with Adrenal suppression?

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Ambatu profile image
Ambatu
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12 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

hi and welcome

I would say reducing every 2 weeks is not helping you.

Fatigue is a major part of any autoimmune disease -and you have not got down the level when adrenals need to start thinking about working again -Pred has taken over that job for the time being.

Couple of links to look at and help you understand what’s going on - one general information, one on adrenals -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

Ambatu profile image
Ambatu in reply to DorsetLady

Thankyou I will read them both

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Ambatu

..and please come back anytime you need us… that’s why we are here…

Ambatu profile image
Ambatu in reply to DorsetLady

Thankyou, I am still getting a slight discomort feeling since I reduced from 15mg to 12.5 but it is mainly at night. Should I go back up to 15mg. I don't see my Rheummy until the 26th March ,?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Ambatu

I think going back to 15mg would be a very good idea… hopefully will be enough. If not come back to us…

SnazzyD profile image
SnazzyD

Don’t forget you have an autoimmune condition that isn’t affected by Pred which just damps the inflammation not the condition.

Your blood sugars may be going up and down which doesn’t help. Pred forces the liver to release its glycogen stores to make glucose which bumps up the levels even before you eat anything. Did you try a low carb diet before you went on medication?

Your adrenal glands are suppressed because you have a surplus of the corticosteroid Pred and they don’t need to work. Usually adrenal sluggishness doesn’t occur until the Pred dose is low enough to require the glands to play their part. This is usually under 10mg.

You may be getting withdrawal symptoms from the reduction speed as DL says. This is the body dealing with constantly changing chemical landscape as Pred affects so many things.

Ambatu profile image
Ambatu in reply to SnazzyD

Thankyou, it's all about understanding the affects of the Prednisone on your body. My Rheumy set me a plan that when I get to 10mg this Saturday I will reduce 1mg per month.

SnazzyD profile image
SnazzyD in reply to Ambatu

This is where it is worth reading DL’s links about adrenals. If yours don’t come on line seamlessly, as many don’t, when the Pred dips below your normal daily operating needs, you’ll feel very and rubbish. If they do, you don’t give it a second thought and just get on with your day. For many, 1mg per month is too fast and 0.5mg is more doable. I had to do 0.5mg over anything from 4-14 weeks depending on how washed out I was. We are all different but if you do struggle don’t be afraid of demanding a slow down.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Ambatu

That may be their plan, but doesn’t mean it will work, for some it does, but not for all. … and the guidelines do say - below 10mg reduce by 1mg every 4-8 weeks depending on disease activity and patient wishes.

You have reduced quite quickly so far, it may not be easy as they or you think from now on… many find reductions below 10mg become a lot more difficult not easier. Much less excess Pred sloshing around your body… and at low doses 1/2mg may be the difference between being plenty, just enough, and definitely not enough…

PMRpro profile image
PMRproAmbassador in reply to Ambatu

Your rheumy may have set you a plan to reduce the dose of pred - but did he discuss it with the GCA? It is in charge and calls the shots. As long as the underlying autoimmune part is active, it will create inflammation and you will need enough pred to mop it up, irrespective of what the rheumy says or wants.

PMRpro profile image
PMRproAmbassador

Unlikely to be adrenal suppression at the dose of pred you are on - it is plenty to replace the lack of cortisol.

However, PMR and GCA are autoimmune disorders. Fatigue is a common symptoms of autoimmune disorders. The pred is managing the inflammation that causes the symptoms you experience but it has no effect at all on the underlying disease process. That continues in the background, attacking body tissues and creating inflammation which is then combatted by the pred, but the ongoing a/i disorder leaves you feeling as if you have flu.

Ambatu profile image
Ambatu in reply to PMRpro

I am experiencing slight twinges in my head when I go bed and a bit of discomfort. Difficult to get comfortable

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