Hi All. I came across this site after looking for advice regarding PMR. I was diagnosed almost 3 years ago and started on 20mg prednisolone gradually reducing with GP guidance.
I’ve now been off the meds for 6 months but still suffer aches and stiffness. My ESR level tells that the PMR has “burnt itself out” according to my GP. Still feeling the effects of stiffness and aches is natural, according to my GP, and should last no longer than a year.
I am a 64 year old male.
Just wondering if anyone else has experienced similar?
In some people the ESR/CRP doesn't rise when they are on pred - that doesn't mean it is gone, it means you are on enough pred. Sometimes it can take 6 months before it rises, there can be a big lag phase. And just because the ESR is under 20-ish which is "normal range" doesn't mean it isn't raised for YOU. What is the lowest you ever got to? That is YOUR normal. Mine is 4, 18 is considerably raised for me. Too many doctors just don't get normal range - that is the range of readings you would find in a population of 10,000+ healthy subjects. Not what is OK for a single person.
Just after diagnosis and on 20 mg of prednisone for four days my ESR and CRP were 41/169.9 respectively . Prednisone was increased to 25 mg and three days later ESR/CRP were 78/43.1 and I had fallen into a complete physical meltdown. Prednisone was increased to 40 mg and six days later, feeling on top of the world ESR/CRP were 15/0.4!
Over the last five years these numbers fluctuated quite a bit and I came to realize that an ESR range of around 11-13 was 'normal' for me and CRP around 9 or 10 was a pretty good indicator of a flare.
All of these numbers are from labs in Canada where the CRP measurements are in mg/L and the normal range indicated on the lab report is 0.0-8.0.
I learned the importance of checking the lab values when I had my CRP tested in Panama recently where the measurement factor was something different.
It's also interesting to note that the labs in both the Northwest Territories and Calgary that I visited are no longer testing ESR and now rely on CRP as a more accurate indication of infection.
The trouble is - while CRP may be a better indicator of INFECTION, it isn't infection in PMR and for a lot of patients ESR is a far better reflection of what is going on. But really it is the trends that should be monitored.
“Still feeling the effects of stiffness and aches is natural, according to my GP,”
Upon what does he base this? How many PMR patients has he had? Has he hurried them all off pred?
If I relied on ESR I’d never have had PMR! Only 11 at outset, I’m told it’s ‘always normal’ but have never enquired about the actual figure. I should, maybe 11 is my high?
Mine has been down to 4, once it was 30 and for several weeks it was 16-18 - no wonder no-one thought there was inflammation in the 5 years no-one worked out why I had so much pain.
I have noticed some aches and pains and fatigue...hard to tell if it is from being a little slower on my 2 year pmr journey, or pmr....however when I pop an Advil it usually goes away.... I would assume it takes a while to lose the stiffness and aches altogether. I also think it’s natural (at least for me) to worry the pmr may be back! Agree with PMRPro about esr/crp. Hang in there!
My experience post-pred, also. Taking NSAIDS keeps me nearly pain free, though I still have stiffness after sitting. My doc thinks I have tendonitis and need to see a physical therapist for exercises to stretch out my tight tendons. Not sure I’m convinced, but doing pretty good 3 1/2 months post-pred, so maybe she’s right.
I continued to have aches and pain and fatigue for at least 6 months after stopping pred (PMR/GCA 5 years). The pains moved around from feet to knees to back. I went back to Rheumy twice fearing a flare. He thought it was pred withdrawal and advised that if tylenol (acetaminophen) helped then it was not likely a flare. I found it helped and all pains subsided by 10 months after stopping pred.
Wow...thanks for that, cdenoncourt! Always helpful to at least think we’re on the right track!!
I just can’t “stress” how important this group has been..... starting from the day I couldn’t get out of bed 2 1/2 years ago. Thank you, thank you, thank you!
73 yr female, pmr for 2 years , off prednisone for 6 months now. Very lucky!
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