Advice

[_multistrada]

Hi all 2 years in down to 10 mg of preds split day night, I have been doing quite well, 62 years old still working a physical job in our timber window company and love it, also need to be able to keep working

I go to bed around 9 am up at 5 am for work at 6am by 1pm I could sleep in the van ☹️ afternoon is office work which helps but I’m am so exhausted this is getting worse Q should I up my preds ? Temporary? Is it the press or the PMR causing the fatigue? I am getting quite depressed with this. Pain in my right shoulder right down to my hand. Sorry to sound so negative but your the go to guys and galls

HELP

Martin

[PMRpro Ambassador]

I assume you mean you go to bed at 9pm? What time do you take your pred? The evening dose will be at 9pm at the latest from what you say - so that will ensure you are not producing any naturally in the early morning even if you have got down to the level at which you need your adrenal function to return? It may be you have reduced a bit too far for you at this stage - fatigue is a part of all autoimmune disease and comes in various shapes and sizes. And people who must work almost always need more than if they weren't working.

But I think the shoulder problem needs a bit of investigation - it may be just one side but that doesn't rule out a flare and another problem could be feeding the fatigue.

healthunlocked.com/pmrgcauk......

[YuliK]

Martin hi there

I’ve found that I’m extremely tired with Prednisone, but on the other hand it could be contributed to other medication I’m taking.

I know many folks here have complained of tiredness.

Are you taking any vitamins?

Sometimes shortage of vitaminD can cause fatigue. Maybe you ask your GP for a full blood count and that will put your mind at rest.

You certainly work very hard, maybe you should try a little less of the physical work, if you possibly can ?

Of course you feel a little bit down with your situation. Myself and others here, have all been down that road.

It will improve, and my advice is to have that chat with your GP.

Keep us posted as to how you are feeling.

YuliK 😷

[DorsetLady PMRGCAuk volunteer]

Hi Martin,

Sorry to depress you even more, but at 2 years in, your PMR may well have some time to go.

Both the underlying PMR and the medication can cause fatigue, so it’s a bit of a double whammy.

Obviously the physical side of your work doesn't help, but if you enjoy it, you’re going to have to find a way of continuing that and managing your illness.

As one of the main issues seems to be one sided - are you sure you haven’t injured your shoulder somehow - or could it be arthritis? Might be worth trying a topical gel, xrays are out if the question at the moment unless urgent.

As for the fatigue, between the physical morning and office afternoon could you fit in 40 winks.?

You could try a week at 15mg, and then drop back to 11mg and see if that helps.

[_multistrada]

Thanks for the feed back I don’t think it would harm if I went up for a bit to 15 just to see the affect, it’s just good to vent sometimes

[Daffodilia]

Would it be possible to take an afternoon nap? I always do

[_multistrada]

That would be nice but not an option really but I do when I can, just ready now as it happens 😅

[Raven1955]

Hey Martin,

Welcome to the "PMR Worker's Club". I'm age 65 and been doing the PMR dance for 3.5 years, was down to 3.5 mg but just now up to 7. Yes, the fatigue is a real issue from time to time and as others have said, we unfortunately need to be a little slower than others with our DSNS reduction schedule in spite of how we feel. Pacing is important but easier said than done! For me, I feel like I can take the whole world on in the mornings but, like you, afternoons will knock me down if I haven't been careful to ration my work in the morning.

I don't know about you but I can have 3-4 months where the fatigue hits me hard and then it can go pretty well for a month or 2. And repeat.

I've just spent the last 3+ months dealing with right shoulder and arm pain. However, the big giveaway for me was the arm and 3 fingers going numb any time I looked up. Ended up that I was running myself a bit low on the prednisone but the main problem is that I've got a pinched nerve in my neck that's making things miserable. I hope that isn't your issue. For me it's a lifetime of heavy lifting that is now rewarding me with worn out back and arthritis which is pinching the life out of the arm. If you aren't dealing with a numb arm I'd boost the pred 5 mg or so for a few days and see what happens. Good luck.

[_multistrada in reply to Raven1955]

Hi Raven that’s so good to hear from a likeminded person and strangely reassuring

This morning I feel good slept well which helps, as you say a life of hard work has its drawback keep in contact it’s nice to share your ideas, I will try you advice and let you know

Martin