PMR and Fatigue

[crazyknitter]

Hi everyone, Nice to talk to you all and find out that I'm not the only one suffering. I was diagnosed with PMR about 6 years ago and have been taking prednisolone from the diagnosis, It controls the pain and to some extent the stiffness but I'm left with the DF and problems with my balance at times. I was down to 2mg but have gone back up to 4mg mainly because I felt so awful most of the week. I kind of feel I should get the doc to increase it again but I'm conscious of the side effects. I'd appreciate your opinions.. Many thanks

[DorsetLady PMRGCAuk volunteer]

If doc does increase it wouldn’t be by very much. How long have you been on 4mg and is it working?

Would suggest DF is mainly adrenals - see this - healthunlocked.com/pmrgcauk...

But could be because you are just too low for PMR. Maybe look at this for dealing with a flare -

healthunlocked.com/pmrgcauk...

Balance could also be adrenal related, but it does need checking- so if you’re going to talk to doctor mention it.

Have just answered another post regarding fatigue, so may read that as well. Link - healthunlocked.com/pmrgcauk...

[pata63 in reply to DorsetLady]

I'll probably look silly, but what is DF please? I'm guessing F is Fatigue given the context? I even looked in the abbreviations FAQ

healthunlocked.com/pmrgcauk...

but no DF that I could see. I'm a statistician so for me DF is always Degrees of Freedom. 🤓

[DorsetLady PMRGCAuk volunteer in reply to pata63]

Sorry unofficial jargon - Deadly Fatigue!

Not sure who initially described as that… but if you have it you’ll agree with description.

[pata63 in reply to DorsetLady]

Deadly Fatigue. Thank you. Been there done that prior to getting my PMR under control. 😀

[DorsetLady PMRGCAuk volunteer in reply to pata63]

Glad to hear you no longer have it.😊

[123-go]

Hello crazyknitter.Basically, your body needs what it needs to control your symptoms and manage the inflammation in your body. Personally, I wouldn't choose to reduce medication because of its side effects but would choose to increase Pred in spite of side effects if my body needed that. If you choose the former it is likely that you will yo yo between doses and that will have its own unwanted effects such as taking a higher cumulative dose.

Regarding the fatigue, it may well be that this is to do with your adrenal system trying to kick in. This is common at lower doses which is when the advice is to reduce in very small steps over some weeks at each step.

It will be helpful if you will tell us your history with Prednisolone, e.g. starting dose and the one where you felt most comfortable.

[piglette]

I have discovered the trouble with DF by increasing you still have to decrease and go through it all again, although I did increase from 5mg to 6mg and coming down was not quite so bad. I found the only answer was to sit it out at the same dose until things improved.

[PMRpro Ambassador]

If your symptoms apart from the DF are OK I really would try to tough it out at 4mg - because that is the only way the DF will improve as the low pred dose means the adrenal glands are stimiulated to produce a top up of cortisol.