PMR & Prednisolone

[FrankP]

I have joined because I have polymyalgia rhumatica . The treatment with Prednisolone (currently 12 mg) is working perfectly against the PMR but I am suffering extreme exhaustion. I wondered if anyone out there may have any experience of this?

[PMRpro Ambassador]

Fatigue is an integral part of all autoimmune disease. The pred is only managing the symptoms - the real cause of what we call PMR is an underlying autoimmune disorder which continues in the background and is attacking your body and causing inflammation which is being mopped up immediately by the pred. But the effect of that autoimmune disorder remains - and it causes the fatigue and flu-ey feeling many people experience.

The fatigue has to be managed by pacing. If you go to this post you will find some links that may help you understand better how to deal with it:

healthunlocked.com/pmrgcauk......

[HeronNS]

Oh yes, definitely. It didn't strike me really until I was down to the physiological dose of 7 mg, but I know a lot of patients feel it much earlier, even finding they are fatigued before starting pred, before diagnosis. Pacing is the key. I made it a point for months, and still really have to pay attention even though having been at a low dose for many months now, to make sure every period of activity was balanced with an equal amount of rest time. Hence this computer time after my 7000 step walk, before I go out and prune the quince bush, then rest a while before a concert this evening, followed by television and sleep!

Even these days I may have a fine time with friends and later feel like I've been hit by a truck!

[Suzanne457 in reply to HeronNS]

Hello HeronNS.... Again ..spot-on advice! Thank you for the very relevant reminder for me , as well !

Suzanne

[Charlie1boy]

Yes FrankP, absolutely loads of experience with fatigue ove r the full 2 and a half years of PMR!

You really do have to take matters easy, and give yourself plenty of rest. This last weekend I definitely overdid it on Saturday and Sunday, as we were doing Open Gardens, and I was on the Plant Sales for the duration. On the Monday morning I hit a complete "brick wall", and had to rest for the whole day. It's not easy to get yourself to rest, but PMR/pred will definitely make you do it.

If you haven't already got a copy, I recommend you get Kate Gilbert's book: Polymyalgia Rheumatica, and Giant Cell Arteritis: a survival guide. I think you will find this very helpful.

Good luck

Paddy

[SheffieldJane]

Hello Frank and welcome, I hope you find this site as informative and reassuring as I do. I think you'll find the extreme exhaustion you complain of is a symptom you have in common with a great many of us. The key is to pace your activities quite strictly even if you feel fine at the time. I have an hour long nap every afternoon if I possibly can. If I have got something big coming up I rest a lot in the days leading up to it as well as recovery time afterwards.

[Tj2017]

Hi Frank,

Chronic fatigue is a major symptom I also experience. I had fatigue before diagnosed with GCA and PMR. The fatigue seemed worse after starting prednisone. Not really sure it is related to the prednisone or the fact that I finally had to admit I was ill and needed to take care of myself. Pacing definitely works yet a tough habit to adopt. If I don't pace, I literally can't keep my eyes open. I am looking forward to when I can taper and hopefully get some more energy.

TJ

[markbenjamin57]

Hi Frank

I think the others here have said it all. Yes, low level, constant fatigue seems to be part and parcel of PMR / other chronic auto-immune illness symptoms. Plus, the extreme / 'deathly' type of fatigue - which saps you mentally as well as physically - is quite common.

This was my experience too, until recently, when it seems that my PMR has gone into remission after 2-ish years (or at least settled down alot) and / or my adrenals are waking up at last. And all of this despite a quite big and sudden reduction (30% - NOT usually recommended!) in the daily pred dosage from 7.5 mgpd to 5, AND being more physically active generally.

As the others here have also rightly said, when under the DF (deathly fatigue) especially, you just have to roll with it and get used to pacing yourself mentally and physically. For many of us, that takes a lot of patience - and the understanding of our Nearest & Dearest / work colleagues etc. to whom we look 'ok' on the surface and maybe can't really understand what's going on inside.

On the positive side (as I've discovered recently), if / when the symptoms abate (for whatever reason), it feels marvellous, and a reminder of what 'Normal' is! The only word of caution is not to assume anything about the future course of PMR since it can return to bite you again...

Hope this helps - try to keep smiling on this long and sometimes tough Journey

MB

[Patience_1]

Yes FrankP, fatigue is something I experience in varying degrees.

When I was at a dose of 15mg and down to about 13mg I regularly got the deathly variety - when suddenly I'd feel as if I would fall down if I didn't sit and rest. I'm currently on 12mg/11.5mg, and what I now seem to have is a fairly steady feeling of fatigue which means I need to take frequent short breaks in between bursts of activity (mental or physical). I'm assuming that if I get down to below 10mg I might get a return of the deathly fatigue as my own adrenalin glands try to get working again.

It's very much an up and down experience, and we're all different though we have so many symptoms in common - if you can understand and know your own limits you can hopefully manage to pace yourself as much as necessary. One thing I have learnt is that I have to listen to my body - determination to do something isn't enough! (Or, at least, determination may get me through, but I pay the price the next couple of days!)

Best wishes

[markbenjamin57 in reply to Patience_1]

Well said Patience_1, I can well-relate!

[PMRpro Ambassador in reply to Patience_1]

One friend said she used to go to buy new clothes and want to lie down under the carousels in Next (other fashion stores are available)...