Before I go to bed in the US....I wanted to let you know the 20mg has made a difference. It feels like my head is 'opening' up to air, some temple/jaw discomfort but not as much. I'll retake 20mg in the am.
One more question~; I felt better in the late afternoon and asked OH if he would take me to The Dollar Store to get just a few items. I got paper, some 'thinking of you cards and a pencil. As I walked with my cane, I could feel the ability to stand getting tougher and tougher. No exaggeration, I was praying I could check out and get to the vehicle. No strength whatsoever. Is that common if you have a flare? After I rested for about an hour, feet up, I felt somewhat better. Is it common to feel so wiped out....sort of like I did in the beginning.
Thank you, my friends. I hope you slept well. xo💖
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Grammy80
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I have had those kind of sensations. Be alert for needing more steroids and take it easier. Good night sweetheart! Just been listening to the dawn chorus here and talking to Australia - miss them so much. 💖 xxx a clear head sounds good.
I too was listening to the dawn chorus this morning at 4am. I had my window open and just lay in bed listening to the birds and the rain falling lightly on the garden below. I find it very calming and almost reassuring to hear nature outside.
I have just been diagnosed with PMR and have been taking pred for just 3 days. I am feeling so much better, but I am surprised to be waking about 4am each day now. Before PMR I would sleep straight through. I recently read that more of the antibodies were released in the body at 4 am each day, and I am wondering if they wake you up, or is it just coincidence?
Hi HalleysComet.Prednisolone itself can cause disturbances in sleep patterns particularly when on the slightly higher starting doses. I have been on pred over two years and regularly have unsettled nights where my wake up time is often around 4am. I have no pain or discomfort though...just insomnia.
However, we also produce inflammatory cytokines (very simply put.....a substance secreted by certain cells linked to the immune system that have an effect on other cells) and these are released into the body reaching peak levels around 3am (give or take an hour each way) and play a major role in morning stiffness & pain.... but can also cause us to wake up around this time.
I know there are others with far more knowledge surrounding this subject so I'll leave it to them to explain more fully, but suffice it to say, what you're experiencing is fairly common and so try not to let it trouble you too much. If you can just accept it and go with it then you'll find it much easier to manage. Take a look at FAQ's where I'm sure you'll find some more info regarding this. Hope that's helped a bit.
Thank you for your prompt reply. It is a huge learning curve for me, never having suffered from anything like this before. As a Biology graduate it is really testing the outer limits of my knowledge! A phone call with my GP is booked in for tomorrow, so I will let him know exactly how much the pred has helped.
Covid-19 has made access to medicine so difficult now. But that is an entirely different issue!
I completely understand what you're saying. I too was in a state of shock when first diagnosed. I went from being a healthy, active gym goer to a person I barely recognised. I was diagnosed in 2019 and have experienced some highs and lows, but gradually I'm understanding my condition and meds better and therefore able to manage my condition and health better. The most important piece of advice I can give you is to not rush anything!.... particularly your steroid tapers! Listen to your body and when fatigue hits....rest! Don't try to push through it...there'll be consequences if you do.
Nobody wants PMR, but there are many things far worse to be diagnosed with. For the most part, it can be 'managed' successfully and for many people, it will diminish eventually and burn itself out.....this will usually take more than the 2yrs suggested in the clinical guidance though. You will be ok and there's a wealth of support and trustworthy advice to be found here. You're definitely not alone on your journey if you're here!
Not antibodies - cytokines, inflammatory substances - and the release often wakes me, especially if I'm not on quite enough pred. For me the effect lasts the full 24 hours - unless I'm verging on a flare.
Off to look at “Cytokines” now. Thanks for putting me right. I need to reassure the GP that I am a sensible , educated 74 year old, not a silly old woman.
The particular and main culprit in PMR and co is IL-6 though there are other mechanisms for the inflammation. That's why I mentioned it - always pays to sound as if you are on the right page
The 'Dawn Chorus' isn't calming here. It consists of bickering foxes being scolded loudly by a pair of magpies over a background chorus of shrieking Herring Gulls.
The magpies tweak the foxes' tails. Did you know that foxes climb up via walls and window cills and hunt and sunbathe on rooftops. They run up and down above the terraces here.
I believe that they moved into cities, where there are few predators, because humans buy far more food than they consume these days and dispose of it badly providing an easily accessible foodsource. That is also true of the Herring Gulls here in Brighton.
I remember visiting relatives in Nottingham many years ago and quite fascinated by the fox which seemed to visit every day. They had more problems with squirrels back in those days. My uncle was particularly annoyed because they had a pear tree and the squirrels would help themselves freely, not to eat the occasional pear, but to take a single bite out of every pear they could get their teeth into!
The white squirrel is actually a genetic anomaly due to a mutated gene from the common Eastern Gray Squirrel. It is called leucism, which is a condition characterized by reduced pigmentation in animals caused by a recessive allele. Unlike albinism, it is a reduction in all types of skin pigment, not just melanin.
From a US site, referring to their population of white squirrels.
If you find pred is making that much difference - then the disease has ramped up its activity. Behave like a poorly person - even if not a VERY poorly person ...
I took 9 mg at 2 am this morning. I honestly don't know what is going on any more. Like I'm back to square one. Why? Yes, pain is all gone (11 hours later as I write) but I also had to take aspirin for headache so that muddies the OA vs PMR waters somewhat. And, wouldn't you know, I'm finally getting my second Pfizer tomorrow and really wanted to stay as low as possible, on the off chance the dose level does have some influence on immune response. Oh well. 🤷♂️
I bought a shopping trolley with a seat - I could not get round a supermarket with out it.
They are all too big and they never have seats - not like the old days when you went into a shop and there were always a couple of seat for oldies like me.
I can't thank you all enough! I have no doubt at this point that I am having a flare. I shall be taking it easy and really don't feel like doing much else.
I can't imagine foxes on rooftops...delightful.. Each and everyone of you...a treasure 💖💖
Sending good vibes your way! We will together, with the help of increasing prednisone, send you Good , good, good vibrations! ( and now you’l have that 70’s song stuck in your head!😇)
* edit: 1966! Beach Boys! Totally the vibe you need in this hot summer heat wave! Please- I beg of you- no matter how much better you start feeling- you probably should not go 🏄 surfing- but dancing with your OH in the living room while making dinner- to that song- now that’s a summer flare remission goal!
Glad you are feeling better. Have to say I am feeling a little more friendly towards pred myself today, although I wish I could have been at a much lower dose before my second Pfizer tomorrow. Oh well, they do say the immune-suppressing effect of pred is not dose dependent so I might as well feel human again - as I hope you also do! 💗
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Wish Me Luck! Update #2
First Rheumatology Hospital Appointment - UPDATE
Feel “Wooden Headed” after taking prednisone
Reducing my meds again
Neck and Back Head pains
