As I've told you all, due to my own ignorance (and stubbornness!), I kinda screwed things up in the beginning of this journey by wanting to be on prednisone for a short of time as was possible. The bottom line to all my and my doc's poor decisions was that I had to start from square one only at a higher dosage 16.5mg instead of the original 15mg! My question is, is 16.5 considered to be a high dosage of prednisone? It seems most of what I'm reading from you folks is you all seem to be under 10mg. All answers accepted! Lol
It’s not a high dose to start with. Some people need to start on 20 or more. You need what you need and the dose will come down in time. Try not to worry. You can’t rush it as you know.
We may be below 10 because we've been on pred for months and tapering slowly. Let me repeat:
s l o w l y .
Hardly anyone is started at 10 and they often have to increase anyway.
I started at 20. 2 years later I’m at 7 for oh, about the third time. I use dsns and sometimes still have to increase a little.
I started at 20mg and after three weeks my rheumatologist got to me reduce to 15mg. DISASTER!
Hi
I started on 40mg last November after being diagnosed with PMR and GCA. I too am cutting the dose slowly and don’t think I’ll be steroid free for some time.
Don’t rush anything, listen to your body and talk to your doctor and rheumatologist regularly
Don't know if my first post went through. If it did - I'm sorry. My computer went wacky.
For PMR, my family doctor started with 20. When I reached the rheumatologist, he went to 60 and I reduced from there. Have been back and forth after reaching 10. Am nearing the 18th month and both my rheumatologist and his awesome APN have said I'm likely to never get off. I'm not going to take that as gospel, but judging by my health at 10, things are not looking good. My body now has so many other issues and it isn't liking any of them.
Hugs... take care and listen to your body. My doctor keeps telling me that a flare after reduction that is too fast is apt to go back to the beginning. Nobody wants that. I can hardly cope with the thought.
MariGrace
lynda62707,
I started at 60mg of Prednisone but I have GCA and PMR and after 2.5 years I am at 5mg. I hope this helps.
I started at 15 mgs 2 1/2 yrs ago and after a couple of flares, am at 9 mgs.
I started at 20 went to 15 in 4 weeks then had to go to 30 for 2 weeks to get pain under control. Now I am at 17 and going slow slow slow to get to 15. I learned my lesson, go slow slow slow.
Recommended starting dose for PMR is between 15 and 25, so you are on the low end of the range. Pred is not a cure, but only manages inflammation. What it means is that how much pred you need depends entirely from underlying PMR activity. Think of PMR as an ocean with ebbs and flows, ever changing. When the water is high, you need more pred. Over time, hopefully, PMR weakens and goes in remmision, and you can reduce dose to zero. But think of it as marathon, not a 100 meter dash. Average, is as you know 5-6 years. Patients and listening to your body is of utmost importance.
Does it last longer in women or men, or is about the same?
Hi Lynda, I did start at 10 and had to increase
What a good way of describing pmr
I started at 15 mg last September and am now down to 9 mg after a small flaire. I hate being on Pred because I have osteoporosis but you can’t rush these things. Good luck
it appears that way based on what I read on this forum, but I don't know of any official research confirming that man go into remission sooner then woman.
No-one should start at 10mg - it is too low to really sort out the inflammation for most people. Obviously there will be the odd person it is enough for. Doses above 20mg are considered high, 15-20 is a moderate dose and 10 and below low. You start at a dose that is likely to be too high - and then you taper slowly to find the lowest dose that is enough to mop up the daily dose of new inflammation that is created every morning. Everyone absorbs a different amount of the dose they take and also responds differently even to the same amount. The taper is to identify the "right" dose for you, not your neighbour or the dog next door... With other medications they do it the other way round - they start low and build up the dose until it works as they want it to but that approach doesn't really work in PMR.
It seems to be almost a totally different disorder for men - they often need lower doses of pred despite being larger and are more likely to be off pred in 2 to 3 years. They often are able to do more too - but that could be because they have a greater muscle mass in the first place. There are exceptions of course.
I have had PMR for 1 year a d there are times I have hurt so bad it was difficult to rule over in bed. There have also been times I have used a walking stick to help me walk because of pain. I think my biggest problem with PMR is I had been sick with cancer and heart attack for one year before PMR and I had lost all my muscle. But, I know one thing that has to be done, reduce Prednisone slowly.
I remember the not being able to turn over in bed - best part of 5 years of planning the action: "Bend knee, one foot here, push with the other, oooh - nearly half way..."!!! Then I couldn't do anything for the next 15 mins...