So I just had blood draw after first month of Humira treatment. I have never had an elevated sed rate or CRP level and today those was again normal. My rheum says “you don’t have typical PsA and so the labs won’t show us improvement and we will just have to go on your symptoms and pain relief”. Anyone else have normal reactive labs values and still have the diagnosis? I’m still baffled by it actually. Has been confirmed psoriatic arthritis by two docs. Only been on Humira for a month and had some improvement. Was at pain 8/10 in the morning in my feet where I could barely walk. Now I can walk in the morning and the pain and stiffness is definitely better. I see him next week and hopeful he will keep me on Humira since it’s showing some improvement in symptoms. I have taken some pix of my creepy feet and snausage toes as well for confirmation as well. Thoughts?
Colin, I've never had a CRP or ESR considered high (until today - but I'll explain that in a minute). They were both actually remarkably low at diagnosis and for the first two years. My ESR has been creeping up over the last 6 months (I've had PsA 2.5 years), but is still squarely within the 'normal' category at about 8.
There are a few things to remember;
- Median CRP is about 0.8, but they won't call it raised until it is over 5, indicating there is a pretty big range in the general population. Similar for ESR, with a median around 1.7, but not "elevated" until above 25.
- So what is my raised might be low for Sybil, and what is someone else's raised, might be low for me. Theoretically we should all run around getting baselines done on our ESR, CRP, and every other biomarker known to man when we are well, so we actually know what the readings mean when we get sick
- From this paper; http://www.ncbi.nlm.nih.gov/pubmed/17828345
- "The determination of ESR and/or CRP is frequently disappointing in PsA, since they are both elevated in only half of the patients with PsA."
I can't locate the original reference now, but an enormous cohort study was done that demonstrated the above comment - if I can find it I'll post it - the whole study was about what the features of PsA at diagnosis are and was very interesting - only 52% of people had a raised CRP or ESR at diagnosis (for many it raised later).
Now that early comment about not having a raised ESR or CRP until today - I almost kept my CRP results from today as a memento - I had a CRP of 71! (due to the Dengue mentioned in the other post - but at least it shows my body is capable of a raised CRP - until now I'd wondered if it was something I biologically just couldn't muster - even when getting bloods drawn feeling awful with some cold or virus etc!)
My inflammation levels have only been raised a few times over the years that I have been having my blood work tested. Even with a large amount of visible swelling, my blood work would remain normal.
The book that is recommended on this site Psoriatic Arthritis,The Facts references that normal blood work shows up in almost half of the patients with PSA. I can't give the exact number as my book is being borrowed at the moment, but my doctor also borrowed it and this was one of the things he mentioned when giving the book back.
These are very sensitive tests and the levels can vary widely even in the course of a day. However many west coast trained Rheumys (and Mayo types) will plot both numbers looking for trends. They normally end up with one or the other that is accurate. A change from the "Patient norm" curve is a call to action despite what the lab says is normal.
Count me in the pool of sero-negative PsA sufferers. I've never had an elevated sed rate or other marker. The first time the rheumatologist ran my blood work he called me to tell me everything was normal and nothing was elevated and to reassure me that this didn't mean I was bonkers or making it up. I thought it was generous of him to call to reassure me that even though my bloodwork came back "normal" that he was convinced of the diagnosis and of the course of treatment he had suggested. He didn't want me to be thrown into limbo by receiving a "normal" result. And, as those who know me well can attest, I'm far from "normal"!!
Oh and like you, I take pictures of assorted swollen body parts. I made a lovely print out which I gave to my doctor last week. I carefully dated each swollen body part with a date and a L or R as needed! He was actually grateful to have the paper so he could see what a bad day looks like for me because, just like with my truck, the days I see my rheumatologist (mechanic) things are almost always running smoothly.
If you can find that study I would LOVE to see it. I have always had nomal Sed and CRP, but I do have a very elevated ANA.
Jen said:
Colin, I've never had a CRP or ESR considered high (until today - but I'll explain that in a minute). They were both actually remarkably low at diagnosis and for the first two years. My ESR has been creeping up over the last 6 months (I've had PsA 2.5 years), but is still squarely within the 'normal' category at about 8.
There are a few things to remember;
- Median CRP is about 0.8, but they won't call it raised until it is over 5, indicating there is a pretty big range in the general population. Similar for ESR, with a median around 1.7, but not "elevated" until above 25.
- So what is my raised might be low for Sybil, and what is someone else's raised, might be low for me. Theoretically we should all run around getting baselines done on our ESR, CRP, and every other biomarker known to man when we are well, so we actually know what the readings mean when we get sick
- From this paper; http://www.ncbi.nlm.nih.gov/pubmed/17828345
- "The determination of ESR and/or CRP is frequently disappointing in PsA, since they are both elevated in only half of the patients with PsA."
I can't locate the original reference now, but an enormous cohort study was done that demonstrated the above comment - if I can find it I'll post it - the whole study was about what the features of PsA at diagnosis are and was very interesting - only 52% of people had a raised CRP or ESR at diagnosis (for many it raised later).
Now that early comment about not having a raised ESR or CRP until today - I almost kept my CRP results from today as a memento - I had a CRP of 71! (due to the Dengue mentioned in the other post - but at least it shows my body is capable of a raised CRP - until now I'd wondered if it was something I biologically just couldn't muster - even when getting bloods drawn feeling awful with some cold or virus etc!)
My crp runs about 10. The only time it hasn’t been elevated has been when I had my cortisone injections. I started Humira 2 months ago… I’m still in pain. But I am feeling way better. So I feel we are on the right path