Just not having a good night. Now down to 5mgs. Body ok but mind depressed. And feeling so tired. Ask myself if perhaps weather has something to do with it. Had a 2 hours dog walk yesterday in the snow. Cold but invigorating. Today damp and horrible. After reading pmr pro message today can I just ask a question. "How does your immune system know when to stop attacking your muscles and when do your white cells get back to normal. Is that what the steroids do ? Just confused. Don't really want to give it too much attention but it is my body after all. Bit fed up with it all. Sorry for the rant. 😥 x
Question: Just not having a good night. Now down to... - PMRGCAuk
Question
Hi morrison, I had a lovely 2+ hour walkabout town yesterday; a bit of window shopping, a nice lunch and a leisurely walk home. Nothing too strenuous or exhausting. Today I feel a bit down and really wiped out... I think it's the "cold," that has the negative effect, on me. I've seen several posts on this site (and others) about how cold weather effects PMR symptoms. Hopefully, tomorrow will be a better day for both of us.
Rant away, that's what we do! I bet you are recovering from a two hour walk in the snow yesterday. And I agree, dull, damp weather doesn't help. Although some wind and cloud is all we're getting here from a "weather bomb" which smashed New England yesterday, for the past few mornings I've woken with very stuffed feeling in my sinuses, even headachy. And all I can blame it on is changing air pressure! What a delicate flower I be. 🙄😀
As for the immune system, it's a good question. One I think we'd all like to know the answer to. Some days I feel splendid, just like my old self, but most days there's a little niggle of something or other somewhere, so I suppose it's still pred which is keeping me mobile, and not my immune system behaving itself at last. I do note a correlation between doing a lot, and it doesn't have to be physical, and feeling wiped out and maybe more achy. I had an unusually, for me, social week last week and I still haven't recovered from the jolly lunch dates with my friends! I honestly don't know why I find that just as fatiguing as an extra long walk. Is it PMR, or just old age?
I think it is far more likely to be your low dose and adrenal function that has not caught up that is to blame rather than the weather - though that may also be playing a role!
No idea how your body knows - nor does anyone else because if they did they could start looking for a cure!
The pred is just acting as a big mop, cleaning out the inflammation that is created each day and so keeping you free of symptoms. It has no known effect on the actual cause of the disease. Actemra/tocilizumab DOES have an effect on the disease process and induces remissionin many, but not all, patients. It isn't really your white cells that are to blame - they are just a signal that something is going on.
As I understand it the Prednisalone deals with the inflammation and stiffness but doesn’t touch the auto immune disease. That just burns itself out and we’re minimising the damage. I feel low too Morrison and don’t know if it’s the awful weather, or a low dose Pred. I just can’t get motivated. This evening I fell asleep with a hot cup of tea in my hand and spilled it. I would have been the third scald case on the forum but I had many layers on and was wrapped in a rug.
I wish we knew why the IS stops attacking its own body - we might find a cure. Perhaps stop feeding it stress of any kind. We ought to have sanatoriums somewhere beautiful.