Fatigue and malaise

[TinklerSMB]

I was diagnosed with pmr 4 years ago and developed gca 4 months ago.

Tapering steroids have helped with pain but not with ongoing fatigue, malaise and depression.

Is this usual? Does anyone have any advice .

Many thanks.

Sue

[DorsetLady PMRGCAuk volunteer]

This link gives some info on fatigue and autoimmune diseases - unfortunately it doesn’t mention PMR /GCA specifically-but gives you an idea -

thearthritisconnection.com/...

Also have a look at this from the FAQs -

healthunlocked.com/pmrgcauk......

[TinklerSMB in reply to DorsetLady]

Thankyou for your helpful replies,.

[SnazzyD]

hello there, the lack of pain means the acute effects of the GCA have been dealt with. However, the autoimmune activity is likely still going on at this early stage. I didn’t feel free of it for many months. Pred never gave me wings either. Until the dose got really low, it made feel rather weak and low.

[TinklerSMB in reply to SnazzyD]

Thankyou for replying, it help to know you are not alone.

[SnazzyD in reply to TinklerSMB]

It does get better, just not at the speed we’d like!

[PMRpro Ambassador]

They tend to be inherent in almost all autoimmune disease - the pred in our case is managing the inflammation and some of the symptoms but doesn't provide a cure. The actual disease is chugging along in the background attacking the body tissues and causing inflammation which is immediately mopped up by the pred. But it leaves the flu effect.

[Sharitone]

I have had TCZ for 11months, am on a low level of pred, my ESR and CRP are very good, and according to the rheumy, there is no sign of inflammation, but the fatigue is still extreme and life-changing. Of course, the adrenal glands must be partly to blame, but otherwise I can't explain it. It's hard because you start to wonder whether it will ever go away. I can't offer any advice beyond the usual Don't Overdo It (and have a sleep after lunch if you can manage it)! But, believe me, you have my full sympathy💐

[PMRpro Ambassador in reply to Sharitone]

Your ESR and CRP are low because of the way TCZ works - it does NOT mean that the underlying autoimmune disorder isn't alive and well and causing the fatigue. In the context of the dripping tap description of PMR inflammation, the tap is running but there is a device that takes the water back to the storage tank

[Sharitone in reply to PMRpro]

Oh dear, that's what I was dreading. Does that mean I can get off pred, but only so long as I have TCZ?🙁

[PMRpro Ambassador in reply to Sharitone]

Not necessarily at all - lots of people get off pred sooner or later even without TCZ. What I was saying is that the fact the ESR and CRP are low doesn't mean what it usually does and just because they are low you can't assume it has gone. It seems a lot of rheumies don't understand that - they see the markers are low and assume it means the underlying cause is gone. It doesn't. But it may well burn out sooner with the TCZ - they don't really know. It does seem to induce remission in many patients but they aren't clear how long it lasts. Some people come off TCZ and have no more problems, others relapse after some months but there is no rule how long it might take.

[Sharitone in reply to PMRpro]

My rheumy definitely thinks it means it is not active. Oh well, all the while he is giving out the TCZ, there doesn't seem to be much point in worrying about it. I suppose the scary thought is 'What if it doesn't burn out, and I can never go for a walk again', but then that's another thing there's no point worrying about.

[TinklerSMB in reply to Sharitone]

Thankyou for replying, it all helps!