When I started this trip on the PMR trudge in November 15.After a few weeks when the pain had subsided I felt reasonably good .i started at 15 mg and now down to 11.5 .Occasionally I get the variouse withdrawal ache and pains when dropping pred at half mg every 2to 3 weeks ,but I am surprised that I feel so drained .I thought after the initial withdrawal that I would feel reasonably back to normal until the next half mg drop .But to day by day I feel as though I am walking through slow drying cement .Does there come a level when I will get some energy going again as I think I did upto a couple of month at the beginning of all this .I sorry to bother ,who I feel are now my friend but feel so tired today and weepy ,hopefully will feel better tomorrow..Due to see Docter 4to 5 weeks for next blood test result but wonder if it's all par.for the course or should I check it out. Hope here from one of you please Carol
Carol,I'm sorry I am not replying with anything useful, as I would like to know the answer myself. I am down to 5.5mg but feel as if I've just climbed Killimanjaro I am so tired. People tend to say " I'm really tired all the time", but this is different, I feel completely wiped out, sounds like you do too. I sympathise. Pam
Carol:
Unfortunately the lack of energy and lack of stamina are side effects of PMR. I am a tennis official and, except for working as a chair umpire i've had to quit working because of the inability to run even short distances. I'm not sure whether there is a connection of this problem with the reduction of pred or whether it is just part of the PMR condition. I'm not sure anyone can answer that one but I can say you are not alone with this condition.
Dont worry about repeating yourself. As I have found, spelling out the conditions help releive the frustrations of PMR. This chat room has been a great comfort to me, understanding the disease better and knowing i'm not alone. Keep writing out your thoughts and don't worry about repeating yourself.
Good luck
Tony
Hi Carol - Same here I'm down to 8 mg and I was fit pre PMR. I thought it would improve as I reduced but just as bad. Sorry to be a bearer of bad news - I suspect it's the PMR it's self.
Hallo Carol. Tiredness is one of the things I have felt difficult to accept. I have had PMR for 4 years, and I'm STILL tired. Mind you I AM 75 years old now so I don't know how much of it is old age!!! You can take a tablet to make you sleep, but does anyone know of a tablet to keep you awake???? Fresh air, walking, etc etc don't seem to do it!
Carol, the fatigue is unfortunately part and parcel of both the inflammation coursing through your body and the steroids themselves. I can remember being on an incredible high shortly after starting 40mgs Pred. However, that was short-lived and the fatigue used to wipe me out. I have been known to fall asleep when at a friend's house for dinner. I learned never to arrange anything two days running, and I know others who would have a duvet day following an outing on the previous day. Feeling weepy is also up there with the symptoms/side effects, and I can remember my emotions being all over the place. Your body is coping with a serious auto immune condition, plus it is also adapting to the steroids and then to any reduction in dose. You WILL get better and you will have good days but always remember never to overdo things on those good days. There is unfortunatel no fast miracle cure, we just have to learn to go with the flow, knowing that better days are ahead, and sooner if we really give PMR lots of respect!
Everybody has the same problems at some time or other so yes, it is a bit par for the course.
The fatigue is part of the PMR as well as being a possibly side effect of pred. As long as the autoimmune part of PMR is active you may suffer the fatigue - especially if you try to do too much. Your muscles are intolerant of exercise and take far longer to recover - so it is always as if you are trying to do things the day after running a marathon. The energy at the beginning was almost certainly the pred high effect - plus you suddenly felt much better than you had felt for weeks.
You really have to "manage your spoons" (google spoons theory Christina Miseriando) . In Germany many people complain of "spring tiredness" and it is a recognised effect. PMR does vary from day to day . Add it all together and you can have really rubbish days.
Pam - you are at a dose where you are expecting your adrenal set-up to work again. It has to catch up. Slow down your reduction spaces a bit. Some doctors like to keep patients at 5mg for anything up to 9 months to allow that - some patient hit that wall earlier than 5mg, we are all different. It can happen anywhere from 10mg down.
Tony - not being able to run, the loss of spring in your step is most likely the PMR. It was the first thing I noticed: I couldn't step up onto the step in step aerobics and I couldn't hurry, even at walking pace, to get across the road or to catch a bus. I am slowly getting back to a decent pace of walking. I've had PMR with and without the pred so I do know the difference between the effects they have on my body.
One lady who found she just needed to sleep all day changed taking her pred to at night before bed - it worked. Now the sleep and brain fog side effects happen overnight and she has far better days without feeling she is about to fall asleep.
Hi Mrs O
You are not alone. I am down to 7mg and it's tough going. Feel I have to get my hiking boots on just to do small things. I have a sore throat as well at the moment which doesn't help. I think I will return to 1 day out and 1 at home. It has helped me in the past. I agree it's hard to plan ahead, the trick being not to be too hard on yourself. Big hug
Wendy
Just for the record. MrsO is now able to arrange to do things to days running I suspect!
She is the person on this site who we all want to emulate: she got to Club Zero some time ago! It does happen, far more than you might think looking at the contributor's posts. She has stuck around to preach the gospel of planning ahead and RESTING!!!
There is one lady who has had PMR for several years who is currently on 0.5mg and posting photos on Facebook of her holiday in Egypt. Yesterday she rode camels and horses and a quad bike after snorkelling the day before. Not quite sure what she'd done the day before - except working her way through the cocktal menu 
There really is life after PMR and you don't always have to be totally off pred. I'm down to 4mg and I'm off to China later this year and have a packed 12 days programme including the Wall, the Warriors and a cruise down the Yangtse amongst other gems (and some work). I'm fully confident I shall survive...
Carol......This may help. I now take my predisone at 10pm and I usually can make it through the day without exhaustion. I find it works very well for me and maybe it would for you too. I must confess though, I went to the movies yesterday and ended up taking a $9.00 nap. Didn't see a single scene of The Second Marigold Holtel. My husband said it was good.
Thankyou every one ,confidence in my doctors diagnoses I think was at its lowest today .My husband has pointed out a few things that I have done this week and perhaps I have over done it .I use to start in the morning and stop after dinner in the evening.But that seams a long time ago now .I am 66 and use to love walking but now a slow walk in the country side at the back of our garden ,probably about a mile and a half can take an hour .i will take heed of what you all say and sit and do my painting or patchwork .Thankgoodness that I can do that as it helps me to relax ,which is something I think you are all telling me to do .It is good to know you are all there Carol . PS one good thing I haven't had to have taken any pain reliefe today .
Eileen, I can actually do things 3 days running! Can't wait for the lady to get back from Egypt with the camel photos.
So hang on in there everyone - I just hang around to let you all know there's life at the end of both PMR and GCA; in fact, having got through the struggles, life seems even more precious - you wait.
I gave up the cinema years ago - has to be a DVD/recording so I can pause where required!!
Three days running???? That is just greedy!
Carol - no don't just sit and whatever. The exercise is good for you. What we are saying is that if you get tired exercising do it on alternate days. Or have that walk to a mid-point where you can have a rest before walking back (the wonder of the country pub). I struggle to walk for 2 hours with no rest - a walk to the restaurant, a long lunch and walk back is perfect with no recriminations the next day!
Thank you so much for staying on and giving us great advice, kind words of encouragement and reassuring us that there is an end to this sometimes dark tunnel.
Big hugs💕
Diana 🌸
Hi Carol,
It is frustrating and discouraging when we can't do the things we used to but if we accept our new limitations and plan around them there is still so much we can do. I love to walk as you do but now I alternate days or go for just a short walk just to get outside.
I agree with Eileen that we now plan on walks, shopping and even visiting with friends so we have time to rest in between.
Patience truly is PMR's friend and we need that so it will be kind.
i hope you are feeling better and can venture out to your garden soon.
Hugs, Diana🌸
Diana, thank you so much for YOUR very kind words. I've been on this forum since 2006/7, the only one available for PMR at the time, by now almost part of the fixtures and fittings! Seriously though I do feel it is important for at least a few of us who have recovered to stay around and offer reassurance and proof that PMR/GCA really does get fed up of hanging around, with our lives eventually returning to normal. May you soon see that light at the end of the tunnel. Hugs to you too.xx
hope you have a lovely holiday Eileen
please keep giving us advise as we newbies need you and Eileen to keep us sane.