Energy

[joat]

GCA. Am on 5 1/2mgs Pred. A couple of times this week after a cooked lunch I have had my usual short snooze but have slept for nearly two hours and found it very hard to come to. Felt like staying on the sofa. Anyone else felt like this?

[maria40]

Yes, I have this. Used to sit for half an hour with a book after lunch but now nod off for up to 2 hours and don't feel like getting up from my chair. I'm down to 7.5mg so wonder about adrenal function.

[joat in reply to maria40]

Suppose I will have to wait until I am on less than 5mgs to find out but good to know it is not unusual, thank you.

[DorsetLady PMRGCAuk volunteer]

Hi,

Agree with Maria could well be adrenals struggling to get going again.

Perseverance and slow tapering is the way forward if it is!

However if you begin to get nausea, dizziness or other problems then ask for them to be checked - ACTH test to see if they are capable of working.

Most peoples are, but some aren’t - but it does take time - it’s like trying to wake a sleeping bear out of hibernation!

[joat in reply to DorsetLady]

Thanks.

[fmkkm]

Frequently, I give myself 1-2 hours for a nap every day. It is one of my favorite things, I take a book and if I don’t sleep I read.

[SnazzyD]

Sounds about right, though I got that problem from about 7mg. Far from feeling better from lower doses, I felt I had nothing left in the tank. Not as advertised!

[PMRpro Ambassador]

I wish!!!!!

[Janstr]

I've had this issue ever since I've been on pred. I end up writing off most of the afternoon.

[PMRpro Ambassador in reply to Janstr]

So try planning a break BEFORE when you would hit the wall and set an alarm. You may well find you lose the beginning of the afternoon but the rest of the day is better.

[marigoldb in reply to PMRpro]

I do this, but often late afternoon, so I keep awake in the evening, for tv, or if I am going out. Set my pinger timer, and like others have a book, but usually nod off straight away. It’s like refuelling I think.

[Janstr in reply to PMRpro]

In sort of do this as sit down to have lunch at 1but invariably fall asleep after eating. I will try resting earlier. Thank you for the suggestion

[Sho-Sho]

I feel exactly the same, have Had GCA for nearly 3 years, now on 7.5mg (have been stuck at this level for over 10 months) , completely exhausted, no energy if I do too much then feel grim for 24 hours, have had the test to see if there is any adrenal function which showed zero. If I'm honest I think I am more fatigued now than at the beginning all those months ago. Have an appointment to see the Senior Rheumatologist at the BRI (Bristol) to talk about going on Actemra - but if this fatigue is due to the adrenals I'm not sure that it will help.

Hope you improve soon.

[PMRpro Ambassador in reply to Sho-Sho]

Um - if your adrenal function is that low, even at 7.5mg, then the FIRST person you need to see is an endocrinologist to assess that side. Actemra may help reduce the pred but it won't make a significant difference to your adrenal function.

[Sho-Sho in reply to PMRpro]

I was referred to an Endocrinologist who did the adrenal synthacen test, said thought very unlikely the adrenals would come to life again, but to try and reduce to 5mg and then test again. My Rheumatologist disagrees as would like to supplement hydro-cortisone to see if that helps. Hopefully BRI consultant might agree.

Thanks for your comments.

[PMRpro Ambassador in reply to Sho-Sho]

It's all very well telling you to reduce to 5mg - but if you can't function at 7.5mg it suggests you are maybe a "50% bioavilability of pred" person and already down in that realm anyway.

One lady on the forum was switched to HC because she has zero adrenal function - despite feeling fine on 2mg pred - and it didn't suit her at all with adverse effects. Back to the pred dose and she is fine.

[Sho-Sho in reply to PMRpro]

Interesting - am making a note of this to bring this up when I see the Consultant.

[Marijo1951]

I tend to nod off in the afternoon if I'm at home and especially if I'm sitting (or more likely lying) on the sofa. However if I'm out somewhere, the overwhelming fatigue doesn't normally strike in the same way and I can function reasonably well, but I am much more tired later in the evening.

[joat in reply to Marijo1951]

I feel the same if I am out in the afternoon. Most mornings I am able to do a few jobs although my head feels heavy and tired, not foggy and I have to push myself - no motivation. Does it come back I wonder.

[Purple-Owl]

Yes Joat! I am also on 5.5mg pred and come over all exhausted just before and just after lunch.

[artfingers]

I might enjoy a nap but I don't think my students would appreciate it. Once we had a teacher who slept while students were in her classroom. We finally convinced her to retire when students started switching shoes while she slept. Ugh. I think if I can't lose weight (lost 5 so far on this low carb diet) that I'll get a sleep test. With my pred weight I know I snore and have issues breathing during sleep. That too can make you extra tired.

[Hidden in reply to artfingers]

I was once invigilating special needs student who had to use a computer for exams. We were in a Small warm room and I had been up since 5am. It was my "reclining chair disability" provided . I was sitting in the laid back position snoring. People I worked with were lining up laughing apparently. They aSked the young man if he was ok and he said yes it's fine. I will say he had no bags and no internet connection and my friend sat outside double invigilating. I think I relaxed the poor lad 😂😂😂

[DianeA1]

Could it depend on how active you were in the morning?

[GlynisE]

I live in Spain and it is normal here to have a siesta after lunch. I go to bed and read and then sleep for up to two hours every day. But I don’t go to bed until one am. If I don’t sleep by five pm I am exhausted.