Posted , 7 users are following.
i usually take 5mg of steroids at 8am as instructed. Have been on steroids for three years. Varying from 40 to 10, back to 20, now down to 5. Latest blood tests show zero ESR results, but from 2am I am in constant pain until about 2pm. Could I take the steroids at night instead?
Any help would be appreciated as I am exhausted!
0 likes, 15 replies
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EileenH doreen25667
Posted
I think you may need to discuss this with your doctor - either the 5mg dose simply isn't enough to manage the PMR symptoms or this isn't PMR you are looking at which is possible.
PMR pain is usually worse in the early morning - meaning about 4-5am. Pain that wakes people earlier in the night may be typical of something else and there are a few people on the forums who were originally diagnosed as having GCA/PMR or PMR but were later found to have a form of arthritis that was causing PMR-like symptoms. This does also respond to higher doses of pred - but the pain returns at lower doses. So does PMR of course - but it was the night time back pain that rang bells for one lady's rheumatologist.
You could try taking the pred at night a few times to see if it would help - but it doesn't alter the fact that what you describe isn't really typical of well-managed PMR so it needs to be discussed with your rheumatologist.
doreen25667 EileenH
Posted
Thank you for your help. I was originally diagnosed with GCA, had biopsies to confirm. No headaches now. Dr has suggested rheumatologist so am waiting appointment. Felt I was decreasing ver quickly after last flare but gp said No! Must reduce as soon as possible! He doesn't. Have the pain! Thanks again
EileenH doreen25667
Posted
"Must reduce as soon as possible!"
That sounds like the probable problem then! Not his pain - and he hasn't told the PMR his rules. It has its own! Just because your original diagnosis was GCA it doesn't mean you won't develop PMR symptoms as you reduce - some people do unfortunately.
If taking the pred at nigh doesn't help - I'd try a bit more. At what dose did the pain return?
EileenH
Posted
"At what dose did the pain return?" - or start if you didn't have it before?
doreen25667 EileenH
Posted
EileenH doreen25667
Posted
Change your GP! Or at least - do so if he won't listen to sense!
Just because it isn't GCA doesn't mean it isn't PMR. And of COURSE the ESR is normal - you are taking enough pred to KEEP them in normal range, that's how it all works! If you take pred and the pain is relieved - then it is due to inflammation. He cannot argue with that - and exactly WHY or WHERE there is inflammation is something for the rheumy to determine, not him. But you can't stop your pred suddenly anyway - after 3 years you will need a few months to wean off 5mg without causing problems.
Nefret doreen25667
Posted
You could always try shifting it to an evening dose, there's nothing to stop you. You won't know if it helps until you try it.
However, if you are in such pain, why is the Pred dose so low? If it were me, that's the first question I would be asking. Have you been tapering the dose quickly?
As far as the ESR results go, about 20% of us here don't have raised inflammation markers. No matter how ill I've been, my markers stay stubbornly at the low end of normal. They should be used as guidelines only.
constance.de Nefret
Posted
Hi Nefret. Like you I've been on Pred/Lodotra for years (ESR 132 CRP 100+) at the start. For the last 2 years both have been in the normal range but I have never been able to understand if there is no inflammation WHY do we still have pain?? It doesn't make sense! Even most of the GPs and Reumies don't believe us.
Whatever would we do without this forum?
Nefret constance.de
Posted
You know, the old medical descriptions still have something to offer sometimes.
When I was first searching for information about PMR (and there wasn't a lot to say the least of it. It's the best part of 20 years ago). I came upon a paper by an American doctor who described the effect that the inflammation caused (by what was then called senile gout) on the muscles as 'glue-stiffening'.
That rang immediate bells with me. I hope you are old enough to remember the washing being starched? And the effect of over starching linen? If overdone, once it was dry you could pull apart the cotton fibres of the cloth and once you had pulled it so you couldn't put it back in it's original state.
That is how my muscle problems appeared to me at that time. Even if the inflammation had gone/decreased/simmered down, the state of the pulled apart muscles didn't alter, so the pain was still there.
How I wish I had kept that reference! To me, at that point, it finally described how my muscles felt and it was the first indication that I was truly physically ill and not imagining it all.
EileenH Nefret
Posted
What an awfully good explanation - the other is myogelosis. And if you make jelly, let it set and then stir it hard - it isn't jelly any more!
Anhaga Nefret
Posted
The "gel phenomenon" is briefly mentioned in the book Polymyalgia Rheumatica and Giant Cell Arteritis edited by Dasgupta and Dejaco.
Nefret Anhaga
Posted
Glad to hear that it's being observed now. That is still one book in my pile of 'must read' books. I'll get there sometime!
Anhaga Nefret
Posted
constance.de Nefret
Posted
I'm certainly old enough to remember starching. My mother starched masses of things (even my school blouse collars!!).
I like your explanation. Perhaps we ought to look at the old fashioned remedies more often too. I'm sure my mother had PMR even though it wasn't known at that time - shoulder and upper arms problems - pains in her knees, etc. I suppose they just rubbed stuff in and took a tablet when necessary. Now we are tested, tested, tested for everything.
Mrs_CJ doreen25667
Posted
Hi Doreen,
i just wanted to mention my e perience. My aching is way better when I take my prednisone at bedtime (somewhere like 10-11).....but my fatigue is worse. There is lots written on this forum about how prednisone at night can suppress your adrenals when u get down to the low doses. This issue started for me at about 4 mgs. I've switched my prednisone to morning and now have less fatigue and a bit more morning aches and I'm working my way to 3 1/2 mgs using the DSNS.