CRP 1.2
Posted , 11 users are following.
I was diagnosed with PMR August 2016, started wth 10mg Pred and now I am down on 2mg/1.5mg with the slow dose method. I was never 100% syptomfree, but ok during the last few months. My main problem were/are the hip and hamstrings area. Last summer before taking the Pred the whole back and neck area was painful stiff. My Rheumatologist told me yesterday to taper down 0.5mg per month, but my CRP was 1.2 and I am still not symptomfree.Therfore I am scared what to do. She told me that the symptoms of my hamstrings would not be PMR related, but this is the area where I felt it first.
Any recommendations?
0 likes, 19 replies
lazyslug Guest
Posted
Hi there. I was diagnosed in Dec 2016 and apart from a small amount of pain in my right thumb and wrist my knees and hamstrings are the ONLY place where I have any symptoms. I've practiced yoga for a number of years and although I can still fold forward and touch the floor fairly easily, getting my hands flat is a different matter. It feels like someone has removed 4 inches from my hamstrings, particularly in the morning. I would suggest your rheumatologist is wrong (that's me putting it politely) 😏
Guest lazyslug
Posted
Rimmy Guest
Posted
Hamstrings !!! - i'm sure many people on this forum will say they are often one of the 'worse' areas with PMR - and one of my first - I was told by a physio to do lots of stretching to 'rectify' this horrendous stiffness months before I ever got a PMR diagnosis - nothing but pred changed that for me ....
Best wishes
pauline36422 Guest
Posted
down to that so quickly. which makes me think it isnt pmr. but after saying that. there are more people on this forum that know lots more than me. i have been down to 2mg, with a couple of flares. but good luck and i hope you continue getting better
Guest pauline36422
Posted
EileenH Guest
Posted
Saying your CRP is 1.2 without saying what the normal range is and what YOUR normal is doesn't tell me anything - but you are the only person who knows what your symptoms are like.
Your rheumy MIGHT be right - but there are plenty of people who find their hamstrings and hips are the place they feel PMR as you do. You say you were never symptom-free - so what you are looking for is whether the symptoms you DO have get worse with a lower dose.
And as someone else has said - that is a very speedy reduction to such a low dose. Either it isn't PMR or the dose you are looking for, the lowest dose that manages the symptoms as well as the starting dose did, is very low, which is a GOOD THING!!!!
So if I were you I would approach the next reduction very carefully and be very aware of any changes - that is the only real way to find out.
Guest EileenH
Posted
They told me below 6 mg/dl would be ok. I had a flare up in January when I had 0.9, but felt horrible. Now I feel 90-97% good, but have 1,2 my/dl.
Before I got the diagnose, they told me at the family doctor in June/July that every blood work they did was normal. My symptoms started at the hamstrings, weeks later my whole back and then the neck area were affected.
August 2016 I started with 10mg and was told to taper down around 1mg/month.
For me the question is, should we taper down when we are feeling in the above 90% of how we felt when we didn't have the pmr. Listen to our body's or trust the CRP? Unfortunately the Rheum didn't really give you any helpful advice.
EileenH Guest
Posted
Listen to your body - but your rheumy does appear to have some strange ideas. 10mg as a starting dose is VERY low - and the 2015 recommendations from the top experts in the world say "Not less than 12.5mg). The fact your bloods are low doesn't always mean at lot - up to 20% of patients with PMR and GCA never have raised ESR/CRP at all, however unwell they are. And feeling 90%+ is probably better than most people manage, pred makes a fantastic difference but it is rare to get to 100%.
Anhaga Guest
Posted
Magy, I agree with Eileen about how seldom patients have 100% relief - at least after the first bit of euphoria when we feel so much better! If I hoped to keep every niggle away I'm sure I'd still be sitting at about 8 or 9. As it is I have to recognize that not all the pain I feel is due to PMR. And by doing the dead slow nearly stop taper I can honestly say the niggles I feel today are no more than I felt at 7 or 8, but I'm now down to 2, pretty much side effect free (although I think there is no doubt that pred irretrievably hastens the aging process) and not suffering any PMR disability. Conversely, if you feel pain which cannot be attributed to any other cause, or to steroid withdrawal, there's no point trying to wait it out. As Eileen has said many times to us regarding pred dose we need what we need. It's taken me about a year to get from the beginning of tapering from 5 to 4 to today as I begin to taper from 2 to 1. If anyone had told me last year that it would take so long to come down by 3 mg I'd have been crushed. But it's okay after all!
And although my inflammation markers were slightly elevated at the beginning, they weren't high enough to raise a red flag for the doctor I had at the time. Nor, which concerns me, but not my doctor, have they come down very much, despite excellent symptom control. So we're all different and your doctor mustn't expect you to fit into a cookie cutter regimen.
nick67069 Guest
Posted
Only you can tell if the symptoms got worse or not. This should be your guiding factor in decision.
EileenH nick67069
Posted
nick67069 EileenH
Posted
daniel08939 Guest
Posted
amkoffee Guest
Posted
All this talk of labs has me terribly confused. My last labs showed my inflammation levels high normal which had my rheumatologist and me quite happy. But I am currently sitting at 10.5 mg a day and at that rate I am just at barely not having any pain. But I'm getting the impression that the blood test are more important to the dosage than what I thought. Just because my inflation markers are in the normal range doesn't mean I'm not still having pain. So I guess I'm a little confused.
EileenH amkoffee
Posted
daniel08939 amkoffee
Posted