Hi, I have been fortunate to get down to 1mg of pred without any flares. I am sticking at 1 for the time being as have a gyne appt Sat morning. ( a hysteroscopy- not with anaesthetic, just to replace a progesterone coil to protect the lining of the womb ) have had it before but looking forwards to getting it over and done!
However I am noticing a slight increase in stiffness after sitting down, getting out of bed . Its not painful . I am hoping its not a signal of a move to increased PMR. I had requested a set of blood tests the other week the doctor reading off the results on the phone said they all looked OK. I had to encourage him to give me the info and he was in such a rush that I forgot to ask about inflammation markers. I have not seen a GP since diagnosis and have contact with the Rheumatologist periodically. I next see him at the end of November . He tends to work more with symptoms than markers.
I would appreciate any thoughts on whether an increase in stiffness could just be the body's reaction to no longer having much pred. Thank you
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Animalover65
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Stiffness in the morning and after sitting are typical symptoms of PMR and could be a sign that you are right on the borderline of enough pred to manage the inflammation. If it stays the same. fair enough, but if it shows any sign of increasing, consider going up a smidgeon. 1/2mg can make a massive difference at any time especially at this level.
Totally agree with PMRpro - and extra 0.5mg probably wouldn't go amiss...
you did post about a month ago just after reducing to 1mg and stated you thought that odd feelings were weather related - but may not have been totally... could have been sign that 1mg is on borderline of pred being enough/not quite enough....
It was jolly useful when I thought my tiredness might be due to low iron and I was able to see that going back from recent to several years ago, they have all been good.
I am down to 2mg and have the same symptoms. Spoken to doctor yesterday who has asked for blood tests. When I checked on my records he has asked for ESR FB and Amylase. Has anyone else had a blood test for Amylase?
I think Patients Know Best (patientsknowbest.com) provides a lot of this information for the NHS app. You might have to register there as well. I can’t remember how I did it it was a while ago.
I am at 7 pred reducing from 15.I notice a number of issues like buttock stiffness when i sit down.
Slightly stiff fingers less severe than when i was not on pred and a few strange muscle pains in different parts if my body.
I know its a combination
of reduction of pred v my PMR.
Mine is not too bad and i have a blood test already booked pre my doctor consultation a few days after bloods.
I hope to stay on 7 only been at that level for 2 days for a week or two before going to 6. My dictor us anazing so we can discuss that when i see her for best options.
Dear Animal Lover. Re stiffness I must say I sympathise with you. I have been having pain in my groin (Sciatica ruled out) and it moves to the big butt and leg muscles (But only on the right side) The stiffness makes getting out of the bath tricky.
If it is muscle shrinkage and reduced strength in ligaments and tendons then exercise would be the answer. The other possibility might be that I need a hip replacement, but feel I am not bad enough! I hear ripples like clicks all over my body ie neck and legs primarily. Can these parts of the body be strengthened with exercise I wonder?
A physio attached to the practice says OE is the likely diagnosis. Perhaps I should have the scan to find out? Any comments most appreciated
PS- I stopped taking 2.5mg steroids a month ago, they did not deaden the pain and it is about the same now. Dr didn't want to give me 1mg perhaps she was worried that after nearly two years, that was enough. I asked if my adrenals were likely to be working and she said she thought so. ( She is very caring)
Poetryb, Are you saying that you went from 2.5mg to zero in one go? I MUST be reading that wrong! If that is what you're saying, you are a very rare bird! Most people's adrenals wouldn't stand for that!
I don't think that I would be satisfied with "she is very caring" - in telling you to stop cold turkey at 2.5mg after 2 years she was taking a bit of a risk and not on her part.
Hello, I too am down to 1mg Pred, I’m noticing g stiffness after sitting etc but it soon wears off, think it’s possibly old age! & as there’s rheumatism in my family history maybe a touch of that too. Good Luck & fab getting down to 1mg, keep going.
Thank you Seasidelass. Well done to you too. !Perhaps we need to remind ourselves to build up our strength gently. Others have said that after stopping pred completely it took another year to feel back to something like normal.
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