Week 4 : 30mg dosage & Deathly Fatigue

[Denis61]

Dear PMR friends,

Could the reason why I am so exhausted most of the time, be because I’m on a relatively high dose of Prednisone ? 30mg ( 20mg in the morning and 10mg at teatime) There are hours during most days when my body feels like a steam roller has just run over it!

Is it just another symptom of PMR?

What do you think?

Does anyone have any suggestions to help eliminate deathly fatigue.

I am so miserable .This DF is so unpredictable that I can’t plan basic stuff from one day to the next.

A walk around the block is like climbing Mount Everest.

Sorry to grumble , up at 2am😔

[SheffieldJane]

I think it is more likely to be PMR at your early stage. 30 mgs is a high start dose for PMR 20 mgs is more usual. You may be making the common mistake of trying to live a normal life and do too much. Pred is only dealing with the inflammation, pain and stiffness, the disease is still very much alive. I got the fatigue at a later stage than you and think that Pred was playing a part. I was strict about naps in the afternoon whether I wanted to go and lie down or not. This gave me a degree of predictability, and I found it easier to function. My ambition for tasks was and is very modest. The insomnia that Pred causes, of course, feeds into the deathly fatigue. You are not alone being awake in the small hours. Sleep Apnea was suggested to me as a contributing factor too. Have you been checked out for that?

[DorsetLady PMRGCAuk volunteer]

Would be inclined to agree with Jane, more likely to be illness rather than medication.

Sometimes you just have to give in to DF and build in rest periods during the day- as also stated sleeplessness probably doesn’t help, so speak to GP or pharmacist for advice on short term sleeping aids.

[SnazzyD]

It could easily be the PMR but 30mg whacked me out terribly.

[Marijo1951]

I'm pretty sure it's the disease. I'm one of the lucky ones in that my first dose of pred got rid of the pain and stiffness in a matter of hours. It seemed miraculous, but I soon learned that pred does nothing at all for the deathly fatigue. However I found that there is one way in which pred can exacerbate the fatigue - its very common side effect of insomnia. When I was on higher doses, it was so bizarre to feel as tired as somebody who's just done a 12-hour shift as a lumberjack and yet be too wired to be able to sleep. These days I have maybe one bad night every week or so, but most of the time I sleep well (still tired though)

[PMRpro Ambassador]

All autoimmune disease tends to be accompanied by fatigue, whatever it is. The pred probably isn't helping - for some people it does lead to fatigue, for others it is a boost and they turn into the Energiser Bunny! Can't say I have ever noticed but I have never been at 30mg!

This is a link to a post about the sorts of fatigue in chronic illness and how to go about managing it:

healthunlocked.com/pmrgcauk......

[piglette]

Deathly fatigue is awful. I have found the only answer is to give into it. I do try and force myself to do one main thing a day so that I am not a total couch potato, but doing much more just kills me at the moment. In my case it seems the adrenal glands are starting to work again, or not as the case may be!

[Dee02]

Hi I am new to this forum. I have been diagnosed 3 months ago with PMR and GCA. I went straight on 30mg of pred and for about a week had so much energy, I was decorating and cleaning. After that week, I have never felt so poorly. Every time they reduce the pred dose my symptoms are terrible. I got down to 20mg and now I’m back on 25mg.

The fatigue is terrible, I can’t work and feel like I have the flu (but haven’t) I’ve also gone straight into diabetes, so having to take meds for that which cause fatigue.

I just hope that I will get some sort of normality back, and will be able to go back to work after Christmas, right now, I barely have the energy to shower

[PMRpro Ambassador in reply to Dee02]

You have a serious systemic illness and if you have GCA your dose is nowhere near enough - the starting dose for anyone should be 40mg. The pred cured nothing - you need to take the pred and then rest! Not springclean...

It is more usual to start at more than 40, 60mg is standard and you remain at each dose for a month, reducing by 10mg at a time if you can. But with that you would still be at 40, possibly about to go to 30. You haven;t been treated aggressively enough for GCA - no wonder the symptoms keep returning, they haven't got the inflammation under control.

DorsetLady will tell you more.

[Dee02 in reply to PMRpro]

Thanks so much, I have other health conditions, hence my GP’s reluctance to give higher dose, plus I was pre-diabetic and after just 3 months I’m now diabetic.

I think that the worst thing is not having any information or support. It’s been a very lonely and confusing 3 months, although I have been back and to, to the GP for 18 months with symptoms of PMR, it was only when I got the GCA and my optician wrote to my GP that they finally listened.

I haven’t even been referred to a rheumatologist, they have referred me to an endocrinologist??

I’m just really confused, lost and feeling very hopeless right now

[PMRpro Ambassador in reply to Dee02]

GCA isn't something that a GP can manage, especially in a complex patient as you are. Lord only knows what they think an endocrinologist can do.

GCA is a medical emergency - like a heart attack or a stroke and must be managed properly. If they have to get the diabetes under control with insulin then that is what must happen but it isn't the end of the world and will improve as the pred reduces.

Try cutting your carbs lots - and put your reply up as a new post where lots of people will see it and reply with advice. I need to go to bed now but others will help too.

[Dee02 in reply to PMRpro]

Thank you I will. Sorry for highjacking this post, I’ve just joined so not sure

[Denis61 in reply to Dee02]

Please take it easy . My thoughts go out to you.

[PMRpro Ambassador in reply to Dee02]

You didn't hijack it - but lots of people simply won't see it because of how the forum works. This is in a thread within a thread and other people don't get all the notifications for them.