Many thanks for all the support last week - was so appreciated. I started taking 15mg of prednisone last week and almost immediately felt a lifting of fatigue - definitely had more energy and a reduction in pain. My question is does its effect carry on building up? I am still fairly stiff and uncomfortable in hips, shoulders and upper arms. It’s not unbearable, I just wanted to set my expectations.
Would love to hear how much of anyone’s symptoms got sorted by this sort of dose and how long it took.
Many thanks
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Limpylissy
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That’s another ‘how long is a piece of string’ question.
It varies from person to person, depending on how much inflammation has built up in your body, how good your body is in absorbing the medication, and what you are doing in your daily life.
You have to remember at the beginning, the Pred is working on two things, the built up inflammation already in your body plus the daily shedding of inflammatory substances [cytokines].
If you think of it as mopping up after a sink or bath has overflowed - that takes time in itself depending how long it’s been overflowing. So that’s one part of job. But if you also leave the taps running, you have to work doubly hard to clear up the mess. So it means you [ie Pred] are going to have to work harder.
Give it time…. If you haven't noticed a considerable improvement by the end of week 3 then you need to discuss with GP. You might be one of those patients that requires a slightly higher dose, or longer on current one. Guidelines state 3 weeks, but back in the day that used to be 4-6 weeks.
Doesn’t look as I forwarded this before, so maybe have a read through -
The amount of improvement they look for is "a global improvement in symptoms of 70% in a short time" - which can be hours, days or even over a week. But that is just a start, pain due to built up inflammation such as bursitis can take much longer to fade, my hip pain took a few months to go completely. 15mg is also the lower end of the range for starting dose and you get better/faster results at 20mg.
Everyone is different - I had over 70% improvement in 6 hours - but it took 3 months to say I felt really better. You say "last week" - how long have you been on 15mg?
Thank you Pmrpro and Dorsetlady so much for your replies - you are life lines! I’ve taken four doses of pred now. My scans said I had quite a lot of busitis’s in my hips and both shoulders, maybe it’s those that will take a bit longer to die down. It’s definitely better but I just wasn’t sure what to expect. I’ll keep going. Have to go back to hospital so they can check the inflammation levels in blood in a couple of weeks. I’m sure that will be much lower by then. So many thanks xxxxxx
Hopefully they will… but it’s not all about bloods as some doctors think. It’s a combination of how you feel primarily and that is hopefully corroborated by bloods.
Good question it's one I can get no answer to but now I'm in this forum somebody can enlighten us. My own situation was that PMR symptoms built up for months before diagnosis and by then getting out of bed was an issue with extreme stiffness, putting on a shirt was a trial as lifting my arms to shoulder height was not pleasant, tying shoe laces and a host of other things were very painful .... but 3 days after taking Pred (15mg/day) everything changed on I had no difficulties, no real pain - absolutely magic !
I was left with a stiffness uncomfortable feeling only in my thighs and in walking any distance I became fatigued and the pain increased until I have to take a break for a minute or two. I did expect things to improve with time but alas they have been present ever since and with tapering of the dose it's this thigh problem that gets appreciably worse. Presently I'm back to 15mg from 10mg for a week and it's improving. Should I stay on 15mg until I can walk for some time without fatigue or is that too optimistic ? My GP does not answer - everyone is different. Tapering on blood tests results alone is not the answer as mine have been negative for 5 months and even at 10mg and I had significant symptoms. Total absence of symptoms is unlikely so maybe he's right everyone is different and each individual will have to determine what level aggravation is acceptable and get on with life. Reduce the dosage as carefully as you can and if you eventually recover entirely and get Pred free it's a bonus 😁.
He is absolutely correct - and be grateful you have a sensible and realistic GP! They are sometimes rare birds!
The pred has cured nothing - it relieves the inflammation to moderate the symptoms in the meantime until the underlying autimmune disorder attacking your body burns out and goes into remission. That can take anything from a couple of years to many years. In the the meantime, you start on a dose of pred that is hopefully too high and taper it slowly in a process called titration to find the lowest effective dose - the lowest dose that gives the same symptom relief the starting does did. And that is different at each stage for everyone.
But the underlying autoimmune disorder remain there, chugging along in the background - attacking your body tissues and making you feel flu-ey and causing fatigue. Being on pred doesn't reset everything and let you go back to normal - you have to do your part and moderate your activity to accommodate the PMR. Eventually you might get back where you were pre-PMR but there is no guarantee and it may take a lot longer than you think, expect or want.
Your GP is right, everyone is different, but one thing that remains the same for all - overexertion and /or go too low on medication and your illness will flare- sure as eggs are eggs.
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