Am I the only one here that actually feels normal with PMR for about 1O hours a day
dose taken at 6 am ...start feeling normal by 11
And then I am awakened at 4 am with stiffness but bearable
Would split the dose but I know it wires me up so
Taking it in the morning is best for a functional day
I may have a milder case and that is why I
Am “pushing “ through from 10
Mgs down by 1 mgs a month as my days are very pain free except for the early mornings
Your 4AM wake up call may actually be your system dumping inflammation into a pred-starved environment.
Try splitting your dose and taking some right before bed. You might get some morning relief.
I still work, so I have to be up and at 'em by 6AM. Early on, I split my dose 50/50 taking half in the AM and half at night. I felt better in the mornings and so, better all day, though I might get a little achy the last hour or two before bed.
In tapering, I deducted from each half till I was down to a 10MG daily dose, then started deducting .5mg from the morning dose until it was almost nothing. I'm down to 5-5.5 now.
Nothing works for everyone, but this works for me.
Does the Pred at night not affect your sleep?
I've never been the world's champion sleeper in the first place, but as I still work full time and have an active commute of 1.5-2 hours each way, I'm pretty much toes up by 10PM. And I'm up at 5AM.
I suppose it depends how you look at it! Not that I can remember what "normal" feels like - 15 years of PMR and 10 years of pred dims the memory 
I would say I feel "normal" all day - doesn't matter what time. I have no morning problems because I am on Lodotra/Rayos which is designed to minimise morning problems and by evening I still feel OK in terms of PMR at least. I have had other medical problems and they required a higher pred dose to manage them in the absence of other options - but now they have been sorted I'm hoping to investigate much lower doses. But I have never been prepared to compromise with the dose - I lost over 5 years to untreated PMR. The scars are deep.
I only became ill two years and three months ago so I still have clear memories of what 'normal' felt like. I can honestly say I haven't felt anything like normal in all this time. I certainly feel better for the pred, but I never quite lose the feeling of being under the weather, 'malaise' as the doctors call it, though it varies in intensity from one day to the next.
You’ve described exactly how I feel. Never quite right, always ‘under the weather’. I also have cold/flu symptoms a lot too. Mind,
better than having pain thanks to pred
I notice from your profile that you, like me, have GCA as well as PMR. I wonder if this is what makes us permanently feel below par.
It could well do. The general malaise and feeling grotty were amongst my first symptoms my CRP and ESR were extremely high then too. Who knows, just one day we may wake up and feel ‘normal’ if only for a day or two, that would be very nice!
🤞🌻 ....fingers crossed emoji for those with no mojis...or Mojo's
I've just done a short walk (10 minutes each way) to the library and Aldi - the way I feel, I could have just climbed Kilimanjaro! It's the sofa and my knitting for me this afternoon (and probably a nap)
So interesting never felt ill or malaise or flu
like in any capacity if
Anything more energized
We are all so different
My usual feeling is of only two of my four cylinders are firing!! Never feel anywhere near my former pre PMR self...
It's good to hear you're coping and feeling so well...
Regards Lena 🌻
My car goes to 2 cylinders when coasting or going downhill...and it say 2 cylinders on dash display...I often think just like me on a good day 😉
Must say I never had the flulike feelings. When I feel pain and have have difficulty moving with any speed then I know I have PMR symptoms.
I feel ‘normal’ 24 hours a day. My only symptoms are leg cramps at night occasionally, thinner skin and sensitive teeth when eating something really cold. No pain and good energy. I feel so ‘normal’ that I took on a 3 month consultancy job in Kiribati - 5 days left. I was diagnosed beginning of Jan 2019, started on 20 mg Pred and slowly tapering to 11 now ( split dose). I read the blog daily and take on board the great advice.
I feel incredibly fortunate but realise there is still a long way to go. I reckon that we fortunate ones probably don’t post much.
I think it's important that you do post if you are feeling okay as it's a good balance for when new people join and are concerned. Just because I might struggle sometimes I don't want others to, and it's always good to hear positive things. Of course that might just be me. 🤣🤣🤣
Hi Darcy. I used to split my dose, but now take it anytime between 1am and 2am. I know that sounds awful, (waking up to take your meds), but I usually have to anyway, for the usual bathroom trip. This has worked out great for me.
I posted this elsewhere, but thought I would do it again for any valuable input. Down to 7.5mg, then on Tuesday had a really terrible experience. Old blood streaming from both orifices, plus extreme sweating and falling/fainting taken to emergency. In hospital for a little over 24 hours. Endoscopy showed gastric ulcer trying to heal itself. A contributing factor could have been taking prednisone WITHOUT food, I would be in a hurry and just throw it down with a small drink of water. Now on medicine for a month to suppress stomach acids, and making sure I take the prednisone with beaucoup food
I feel pretty normal 24/7 just a dull ache in my shoulders if I stay still for too long and sometimes a headache up the back of my head spreading from the shoulders. An earlier reply included teeth being sensitive to cold. Mine too! but I and my dentist put it down to aging (I' m all of 60!). I also get 4 or 5 mild sweats a day and the odd more major one at night but I really can't complain when I read some of the symptoms you unlucky people out there have. I am on 10mg a day after nearly 5 years so a high dose for that long I think but I'm not prepared to compromise quality of life at the moment.
I also have pain free hours. I get stiff in bed but that goes once I get up and move around. I then get pain around 10am for an hour or two then seem to be clear from pain for the rest of the day. I am on 6mg pred going to 5 1/2 in a few days
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