Deathly Fatigue on 5mg Prednisolone

[JEMOK]

Hi all you knowledgeable people. I had managed to taper down to 5 mg but was extremely unwell in January with Covid & went up to 10 mg for 7 days then dropped down to 8mg for 7 days & then back to 5 mg. I now have pain in tops of both arms/shoulders & feel absolutely exhausted all the time & my question is should I keep going on 5 mg or go back up to 10mg where I had some relief from pain. Also how do I know if it is inflammation or adrenals stuttering 🤔

[DorsetLady PMRGCAuk volunteer]

Would say it’s a combination of 3 things -firstly the after effects of Covid itself -which can hang on longer than you think, secondly covid causing a flare of your PMR and finally your adrenals struggling to cope.

So perhaps back to 10mg -maybe bit longer than a week (as you say “some” relief last time) -then down to 7 or 8mg -but stay there this time. At least a month to ensure you have things under control before you think about next taper… will help adrenals as well. You can stay at 10mg for 14days without causing an issue in dropping back down to lower dose.

[JEMOK in reply to DorsetLady]

Thank you so much for your invaluable advice as always & to PMRpro too. I will go back up to 10mg for 14 days & then drop down to 8 mg & stay there for a month or so to see how it goes. If I feel ok do I then start the DSNS taper again?

[DorsetLady PMRGCAuk volunteer in reply to JEMOK]

That sounds sensible-just make sure you feel okay. If not, you know where we are..

[JEMOK in reply to DorsetLady]

Aww thank you it means the world just knowing you are all there ☺️

[JEMOK in reply to DorsetLady]

Well I followed your advice & am delighted to say I have just completed 1 month on 8mg & I am doing ok but I need your invaluable advice once again. Should I drop down to 6mg & stay there for another month or straight back to 5mg or just embark on the DSNS taper again? I am confused as to what’s the best course of action for me to take 🫤

[DorsetLady PMRGCAuk volunteer in reply to JEMOK]

As you have been on 8mg for a month…it would probably be sensible to use that as your new starting dose for the DSNS taper.

You might be able to drop to 5 or 6mg without any issues, but it’s a risk… and you really don’t want to upset the apple cart.

Your adrenals will probably be happier as well…

Good luck.

[JEMOK in reply to DorsetLady]

Thank you so much I will do as you suggest 😊 Happy Easter 🐣

[PMRpro Ambassador]

The Covid may have moved the goalposts a lot further than you think! It lasts a lot longer than a cold for many people. And you say you only got SOME relief from pain - sounds as if the Covid has really rattled the cage of your PMR and it isn't "just" a flare. It may be you need a higher dose rather than sail back to 5mg once you have the symptoms under control but you have to do that first.

[UnicornDancer]

Hello Jemok, first of all I empathise with covid and its after effects, really exhausting and it is a strong learning curve to acknowledge what our bodies are telling us. I was critically ill two years ago, actually died and was brought back again to live to tell the tale - shortly after had the symptoms for polymyalgia although pred not prescibed long term until this time last year. So, Living To Tell The Tale, has meant a huge amount of learning!!!! After ALL the promises made by family and friends I seldom see or hear from them as they have said how well I look and how well I am coping - so I have gone out and grabbed another life, found new friends, extended my craft interests and rest when I need to. sometimes I will stay on my bed, reading, listening to radio, phoning new friends!! Sometimes two or three days at a time!! When I tell some people I am not available I receive weird feedback as I know they do not believe me - however, handing out info can help!! Taking out equity on my house has helped, I can have lots of treats, a new summerhouse, and afford to run my trusty Astra car!!! Resplendent with its new tyres and battery!!!

I think I am trying to say the emotional toll of polymyalgia is not to be minimised and it takes guts and determination to steel ourselves along the way - this forum has been of untold benefit for myself and is my go to place, I thank you all SO MUCH and will continue with the slips and surges, the frustrations and the limitations. Strength be with us all x

[random901 in reply to UnicornDancer]

Love your attitude, UnicornDancer! Have reached that stage myself recently. Am in "please myself" mode after unsupportive comments from some friends and certainly some family. Went to glass workshop yesterday, met new people, got creative. Short holiday booked for end of April. Plans to revamp interior of campervan. I'm with you on this forum, too - it's like having new friends and family!

[Cyclo5]

I would say the other responders have advised very well - DorestLady, PMRpro et al.

Post COVID-fatigue definitely a factor, PMR (probs the pain in the shoulders) caused me deathly fatigue and it may be worth a thyroid test. From memory, pred can affect the thyroid too (PMRpro can advise better?), if the thyroid is even a little underactive you will likely feel exhausted, along with post-covid and PMR.

Best of Luck -

[JEMOK in reply to Cyclo5]

Thank you Cyclo5 I will ask my GP about a thyroid test 😊

[PMRpro Ambassador in reply to Cyclo5]

I don't think it actually affects the thyroid but pred can sometimes suppress the levels of TSH and in patients with hypothyroidism having regular checks the doctor may think the hypothyroidism is under better control than it actually is and may adjust the dose down when really the patient was doing well or even needed a bit more.