Fighting fatigue!

[Kingcharlesdog]

I am a 73 year old woman. Diagnosed with PMR 5 weeks ago and prescribed 15mg Prednisolene Worked well and so reduced after 3 weeks to 12.5 . But by the middle of the day I become really tired . I have no pain only stiffness after sitting. Is this normal to be so tired?

[PMRpro Ambassador]

Hi and welcome!

Have you cut down on your activity levels since being diagnosed and started on pred? Pred isn't a get out of jail card to go back to normal life - it is only relieving the symptoms and the actual illness is chugging away in the background, having much the same effect on your body as having flu would do.

DorsetLady will be along with her welcome post later and that will explain lots. I'm on my way to bed - it's an hour later here in Italy! But I'll be back tomorrow ...

[PMRpro Ambassador in reply to PMRpro]

Oh, and a PS - could you change the title of your post to indicate what it is about rather than a name that doesn't really mean anything, More people with relevant experiences will look at it then.

[Kingcharlesdog in reply to PMRpro]

Thanks for the tip . New to this How do I do it ?

[DorsetLady PMRGCAuk volunteer in reply to Kingcharlesdog]

EDITING YOUR POST

Can be done at any time, not just at outset.

Underneath your post you will see options - Select "More V".. from options select Edit. You will then get your post in draft format. make your adjustments - and then select Post. Job done.

Thank you -

More info re posts here-

healthunlocked.com/pmrgcauk...

[Kingcharlesdog in reply to PMRpro]

Thank you so much for your prompt reply. I have cut down some of my activities but perhaps not enough. ?

[PMRpro Ambassador in reply to Kingcharlesdog]

Very likely! And some things are harder on the body than others.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

As PMRpro has said maybe have a look at this - and although 15-12.5mg is a recognised taper, it’s not for everyone… and you do need to manage your illness - and learn to pace yourself - there is a link within this post -

healthunlocked.com/pmrgcauk...

[Kingcharlesdog in reply to DorsetLady]

Read through the links . They are a brilliant help . Thank you so much . Explains so much about this illness . Now I have to accept a slower pace .

[DorsetLady PMRGCAuk volunteer in reply to Kingcharlesdog]

👍

[Crusty1949 in reply to DorsetLady]

You have to remember, as much as you want to get off the prednisone, taping too fast can almost worse than the initial pain. The flares can be terrible. PMR is a marathon not a sprint. Good luck, I’m 75 and it took me two years to get and stay at 0. Everyone on that forum are great and will be a shoulder to lean on, take advantage of it . You are not alone.

[DorsetLady PMRGCAuk volunteer in reply to Crusty1949]

You’ve replied to me, but as author Kingcharlesdog should see it…

[Ruins67]

I started off on 15MG. It took a few weeks for it to take effect and I certainly didn’t reduce until after I’ve been taking it for at least a month at that level. I only reduced it by one MG. I think 2.5MG is quite a lot to reduce after only three weeks. You need to do it more gradually. There are plenty of posts and information on this site about gradually reducing your dosage.

[Kingcharlesdog in reply to Ruins67]

Thanks very much for your advice

[Missus835]

Hi and welcome. Seems like too soon a taper for sure and 2.5 may sound like a small amount, but in PMR world, it's very big. I cannot do 2.5 mg on a taper. Everone is different. The pred is not a cure, but does reduce inflammation. Rest is a necessity. PMR has a mind of its own. Stick with our forum. We'll get you through it. Slow 'n steady, but it's not a race.

[Kingcharlesdog in reply to Missus835]

loving everyone’s help Thank you

[Gioielli5]

All autoimmune diseases bring with them chronic fatigue. I have both PBC and recently developed PMR. Still on 12.5 mg a day and pain is being relieved but fatigue is bad. Just hang on in there. PBC for almost 18 years now so should be used to it but it’s still debilitating. X

[Kingcharlesdog in reply to Gioielli5]

Thanks for your reassurance Now I know fatigue is to be expected

[Thelmarina in reply to Gioielli5]

Sorry to hear about the PBC and now PMR. Rotten. Thank goodness for steroids and even daytime telly!

[Gimme]

As others have said, extreme fatigue seems to be pretty normal for people with an auto immune illness. I often need to sleep for 2 or 3 hours in the day and I sleep like a baby at night, even after being on pred for over a year. I wish I had an answer, as it is seriously cramping my quality of life. A vit supplement with the B vits and good levels of folate and B6 helped a little bit and light exercise slightly improved my energy levels, but it is really hard to get a balance with exercise. If I overdo it, I'm poleaxed for days.

[Kingcharlesdog in reply to Gimme]

Thank you so much for giving me some tips

[random901]

Hi kingcharlesdog. Fatigue for me is the worst thing about it. Pain, stiffness and an incredibly slow walking speed I can live with. But fatigue comes on suddenly and puts an end to any plans. Give into it and have a nap or two. I have at least 30 minutes kip post lunch, and often a morning nap around 10. Feel much better for it!

[Kingcharlesdog in reply to random901]

It’s good to hear others suffer from fatigue as GP never mentioned it. And I thought steriods gave you energy!, Thanks for your reassurance.

[PMRpro Ambassador in reply to Kingcharlesdog]

Suggests he doesn't know a lot about the reality of PMR ... And the energy pred gives is a false friend - there is no substance to it!

[Kingcharlesdog in reply to PMRpro]

Starting to cut down my activities now Hopefully energy levels will rise.

[offprenisone]

yes . I have had polymylia for 12 yrs...flu like feelings and so tired..I'm tapering and now down to 2 and a half mg..hang in there..and rest

[Kingcharlesdog in reply to offprenisone]

Taking your advice . Pacing and resting .

[Thelmarina]

Take your time, taper 10% of the dosage you’re on each time not 20%, using the slowest taper to start off with. Have a short nap in the afternoon if you need it. Your body will adjust helped by your acceptance and adaptation to a new way of life. Emphasis on the word life. How precious is it! 😀i