hi,just wondering about sleep.

[Flosy]

hi just wondering about feeling tried all the time,i am on 9mg.have to make myself do things,i am thinking about going back to work in nov,as a housekeeper.i might have ask this before.sometime my head feels like something crawling over it,is this usally with gca. i was dignosed in march of 2020.i get quite worried sometimes about myself.please help me.thanks.

[DorsetLady PMRGCAuk volunteer]

Hi,

Having reduced from 60mg to 9mg within a matter of 6-7 months is very quick!

Your head issues are a bit concerning - usually the description for GCA (and mine was) is a tingling all over and tender to touch - suggest yours probably should be followed up.

Fast taper would also make you fatigued - and would definitely say you’ve gone below level of Pred required. As for going back to work next month, you certainly need to improve considerably before that’s a possibility.

Please contact either your GP or your Rheumy Dept for advice.

[Flosy in reply to DorsetLady]

Ok thanks very much.

[PMRpro Ambassador]

The fatigue of autoimmune disease is different - sleep doesn't "cure" it and that is part of the definition. But very fast reduction can also cause it - your poor body never gets to settle down between changes.

Have a read of the links here:

healthunlocked.com/pmrgcauk......

I can only say that most people I know took 6 months to get to 20mg from 60mg with GCA - and that 10mg or so will make a BIG difference.

[SheffieldJane]

I agree with DorsetLady you need to have this active GCA symptom investigated.

With regards to work. We fall into the vulnerable category due to the Pandemic. Are you getting all the assistance that you are entitled to? Financial and otherwise. Now is not the time to be venturing out . The fast taper is not suiting your disease which will have to run it’s course. You have been complaining of tingling sensations for a long time. Please seek medical advice promptly.