Pain returns dose increased
Posted , 8 users are following.
Hi everyone, Well after getting down to 10 mil of pred and staying for about a week the pain in my left groin and thigh was so bad and I felt the neck and shoulder stiffness beginning to come back that I had to call my Rheumy today.
He told me to go back to where I felt it was tolerable which was at 12.5 so I did and hoping it helps because I was afraid I would get as bad as when first diagnosed. I was totally pain free at 20 mil. back in Feb.
Ive only been the pred since Feb of this year and thinking maybe my Dr started the taper to soon.
My question is if anyone takes their full dose all at once since I take 10 in am and rest in pm and it has been working. I was told that its best this way since the pred wear soff after a certain amount of hours but not sure if this is accurate.
Thank you,
Sharon
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EileenH sharon35553
Posted
The antiinflammatory effect of pred lasts for 12-36 hours depending on the person so taking the dose in one lot as early in the morning as possible before the inflammation really gets hold for the day may work for many people. For others who are "12-hour people" the split dose works better but you can only find out by trying.
A top expert in PMR co-authored the "Bristol paper" as we call it - the link is on this post:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
They found their reduction scheme reduced the rate of flares from 3 in 5 with other schemes to 1 in 5 with theirs. They keep patients at their starting dose of 15mg for 6 weeks and then 12.5mg for 6 weeks - which actually fits with what your rheumy told you to do. However, many patients struggle with steps of 2.5mg and, from experience, we feel 1mg at a time if quite enough. Some people even struggle with that and this scheme has proved useful for many patients, spreading the reduction over a few weeks so the body notices it less:
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
Another factor is that some patients only absorb about half of the pred - which means they are effectively on a lower dose so it may not be as effective.
You will get there, just not yet. It all depends on the activity of the underlying autoimmune cause of the symptoms to which we give the name PMR - if it is more active, you will need more pred.
EileenH
Posted
PS - rereading your post makes me wonder if the hip and thigh pain is bursitis rather than "just" PMR. In which case localised steroid therapy will work far better than oral pred. Just a thought.