Hi folks, I have tapered to 4 mg pred and the horrid fatigue I had been experiencing has slipped away!! As a matter of fact, its 1:30 am, and Im wide awake...didn't take my daily afternoon nap, yet still not ready to sleep. Guess I’ll start reading a new book 😜.
Cheers, Jerri
Lucky you! The night is my most lively time too. Perhaps we should have a party?
Still rubbish tired during the day.
Party?? Yes! 😁
Someone mentioned party? Count me in but giz me a bit of time, it's not just a quick bus trip from Auckland (NZ). Ha ha.
You got it!!🤣🎉🎊💜
When I get hyper and sleepless after being on a dose for a while I reduce by 0.5 mg. There follows the usual dip, of course. Dropped by 0.5 mg early August to 3.5 g and the fatigue is still over-whelming during the day. i am semi-recumbent of the sofa for much of the day. But I am sleeping well for the first time in years! It does seem as though my adrenals wont wake up, after 9 years of PMR and Pred. Synacthen test in due course, when my GP can be persuaded that this is not simply a case of "not accepting your age." At 77 I am by no means an on old woman. But I have PMR! Two friends my age run two homes, one abroad, have large families, play tennis and golf, go on holidays overseas and gad about town. I get the vapour just thinking about the energy they expend!
yep, I, also have friends who go waltzing, (literally) 4 times a week, and others for whom a hiking tour through England was the celebration of their 40th anniversary!! Me, on the other hand, not so much!! 🤣. But the fatigue is gone for now, and I’ll sleep when i do.
Hi Jerri,
Good news, but don’t get carried away and do too much - you still have the underlying illness to consider.
But it’s one more step in the right direction and it does make such a difference! 😊
Not to worry... i am careful to pace my day, and stop to smell the flowers along the way💜
I just suggested to SJ - have you tried taking the pred at a different time? One lady slept all day and could have danced the night away. So started taking pred before bed - result: good night's sleep and productive days.
Good advice PMpro. I take my prednisone late at night n seem to be sleeping better.
Will try🙏🏼
How would you change from breakfast to evening?
Having taken your normal dose in the morning - take the next day's dose immediately before bed. If you decide to go back to a morning dose, take about half in the evening to take you overnight and go back to the normal dose the nextmorning.
Thank you💊
Hi PMRpro, You seem very knowledgeable about this illness. What is your opinion about flu and or pneumonia shots?
Have them - flu is about 50% useful most years - no-one wants flu and if they reduce the chances, go for it. It is supposed to be better than that this year. You can't get flu from the shot - though some people may get the sniffles. They were almost certainly hatching it already. Do NOT have the nasal version - it is a live vaccine and not to be used for peopleon pred.
Can't say much about the pneumonia one from personal experience - though it too reduces the risk for some sorts of pneumonia (not all). Taking some out of the equation is always a good thing.
That's good to know, Jerri!
I have had a similar experience recently at 2.5 mgpd Pred after reducing cautiously from 3. Maybe it's a sign that everything is waking up in the adrenal department and the system is getting back into balance at long last..? It's such a relief not to have the DF (Deathly Fatigue), or at least not so badly / so often. For me, at least, that's the worst part of PMR and / or steroid reductions...
Fingers crossed it will continue for you / any of us in the same position 
MB 
Thanks, i agree what you say..🙃
The party's off then? 🙁🎉
Oh goodness!! Party’s always good!🤣🎉
So glad to hear fatigue has lifted. Now that it gets dark earlier, I’m finished for the day by 3:00 pm! You give me hope!
Hi Sandy, ...i have just tapered to 4 mg pred...and think my adrenal gland is functioning...so I have an abundance of energy...wittnessed by fact that its 4:30 am, and for third nite in a row...sleep evades me. Even my daily nap is sabotaged by feeling well, and I have been skipping it!
I am into year 4 with PMR, so this has not been a quick journey...but it does pass.
So on your journey, take lots of time to love on that gorgeous grandbaby, and stop to smell the flowers every day.
Kind regards, Jerri
Thanks for the good advice! Pacing is challenging. Never know when I tip the scales and overdo! Skipping Tai Chi this morning because I have a lunch date in NYC. Being charming is tiring! I make transitioning from NJ to NY easier by taking the bus.
Yes, enjoying grandchildren is wonderful. Looking forward to making Thanksgiving for 15 people. Luckily I have help!
Try to rest even though you have so much energy!
I’m cooking the turkey and letting others bring the rest of dinner😊. Happy Thanksgiving, J
Happy Thanksgiving to you, too!
Hi Jerri,
I still can't get used to this fatigue. I'm now on 5mg and still feel a real fraud for feeling so tired. Like others, my good time is in the evening but I'm only 62 and having so little energy is completely alien to me. So well done for your increase in energy. Long may it last.
Hi Sandi, I understand the feeling you mention...
all i can say is, trust yourself, this is not an imaginary disorder and it will pass...in its own time...
I am 4years into my PMR journey, on 4 mg pred, and I believe my adrenal system has begun to function...thus the fatigue has remitted. .
Everyday, For 4 years, I took a brief nap (sometimes sleep, sometimes just rest) . That mandatory rest period helped me manage some of the fatigue.
Good luck, Jerri
Thank you for your supportive reply Jerri
Well done re your taper to 4 mg. I took 6 weeks to get from 5 to 4, but all the aches came back, so back up to 5, disappointed though!
How long should I leave it till I try again?
Best wishes
Hi Mari, I am a very cautious taper-er...i have stayed at levels for weeks/months, working around holidays, life events and just “stuff” that gets in the way of tapers.
I have been lurking around the 2-7 mg range for a year. Its taken me several attempts to “stick the landing”, and actually be able to claim success at 4 mg.
To answer your question...I’d probably wait a week or two, or three or four. When you have no pain for a period of time, give it another try..
as others on this forum have said...its not a race to zero...
So relax thru the holidays, try in the new year😁😁
Kind regards, Jerri
Thankyou Jerri, you made sense, and I will leave reducing till NewYear. Best wishes to you x
By the way, it’s been so reassuring to read others suffer from the awful PMR fatigue, don’t feel so alone now. I really have to pace myself, being taken by my daughter and family to see the film Paddington 2 this evening. Don’t often do evenings! Looking forward to going, but it’s on the couch this afternoon.
I know I’m lucky to be retired and have the luxury of being able to do so. However really would love to have my old energy back.
Best wishes to all
By the way I like the abbreviation DF, from you MB
Definitely energy level is increasing, Or is it more accurate to say I always had the energy but lacked enthusiasm. That's changed significantly and can't wait until morning to get on with another project! Very careful to not overdo it, though. But not sure if I can credit this to lower drug dosage or that it is almost summer.
Hi Sondha, your “almost summer” is our almost winter!!
Lucky you, heading into sunny warm temps! We had 6 Inches of snow last week , and its wet cold now ❄️
Do enjoy your returning enthusiasm...I hope your energy level rises to match it❣️
Kind regards, Jerri (from wet cold Washington state, USA)
Who cares if it is mind over matter or just a matter of summer . . . after 11 months of tapering off drugs for GCA, I feel 90% better! What is left - a bit of morning stiffness - I attribute to being a (slightly) degenerate geriatric. It would have been there and ongoing before. Did what I pleased but this episode has whacked me into submission and take my health more seriously!
Just a few months more, Jerri - and it will be your turn to hear me grumbling about the cold. Ha ha.
Cheers
😆🤣happy Summer👏
Does the cold weather intensify your pain?
Yes, cold weather does aggrevate my muscles. I am cold sensitive and careful to wear clothes that keep my shoulders and legs warm. 🙃
I hear you, the cold n snow has begun in my neck of the Maine woods ⛄️.
Oh,...poor you! You folks in the NE get hammered in the winter!
We actually get very little of the weather that you get!❄️☃️💨. Ours is mostly rain which keeps the Pacific maritime NW green, 😁.
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