Yesterday, at a nurses appointment, I learnt that my SED rates have been elevated for several months now, currently at 55, but have been as high as 70. I'd not been aware of this, so hadn't really thought about it before. I know that SED rates are elevated in only about 50% of PsA sufferers, but I'm wondering if there is any correlation between high rates and disease severity/prognosis/propensity for joint damage etc. I can't seem to find any information on this, so I thought I'd ask you guys for your valuable insights/experiences.
Here is what I understand, and feel free to correct me. If your SED rate gets elevated by inflammation, than a high SED rate is indicative of greater disease activity and potential damage.
That said, my SED rate has never been elevated, and I just had my first surgery related to PsA this past summer. I wouldn't say that I have severe disease necessarily, but even when I went in to the rheumatologist in my worst flare ever, when I had Fifth's disease, no elevated SED rate. So for me, there is no correlation between elevated SED rate and joint damage.
There is a little bit about this in Gladman/Vinod PsA: The Facts (pages 91 and 111). Seems to say that the factor which predicts joint damage is the degree of joint inflammation measured by both the number of swollen/tender joints as well as elevated ESR/CRP blood markers.
My markers consistently pretty low. Normal for me is ESR 2 - 5 and CRP < 1 ............ and only one of my flares showed up when I went 100+.
I can see that several of my finger joints are becoming deformed so this appears to defy my blood results. I don't know. Everything about this disease confuses me :-(
I don’t know. Everything about this disease confuses me
Me too, Jules
My inflammatory markers have never been anything but slightly elevated, and I guess that was part of what delayed my diagnosis. But get this. During the year when my rheumatologist treated my disease as “mild”, my hip went suddenly very bad. From the imaging, the orthopaedic surgeon suspected the damage was inflammatory. During THR surgery, they discovered extreme inflammation, so we know that it was PsA. When they routed the pelvis out to install the socket component, the inflammation was so bad (lots of vascularization) that I lost two litres of blood. And even then, my inflammatory markers were never particularly high. Go figure.
Perhaps I can confuse things. Yes ESR and CRP are a measure of inflammation. Right now we have a Locum from Mayo Clinic sort of over seeing things. Turns out his PhD (Piled Higher and Deeper) thesis was on this issue. We got into it when I was telling him I felt like crap and he told me my inflammation was well under control and felt uncomfortable making a change in biologics. (he believes BTW there is FAR more to PsA than just inflammation, so i didn't Punch him. What he did was track both the ESR and CRP on a group of patients with seronegative "inflammatory arthritis" Hourly for 48 hours. H found the Sed rate would vary in that period by as much as 60 points. he uses those measures but strictly as a trending tool.
I have another theory which I hope will be well studied... It points towards Seenies problems. There is a particular type of enthesitis that runs through the hip and area. It is so pronounced at times that I once was being worked up for a hernia repair. PT cleared up the pain for me (it took several months and a LOT of swear words) enthesitis has very little inflammation with it because some of the entheses are smaller than a pencil lead
The other thing is their is a lot of bone marrow in the hip area (its one of the areas they go to for donor marrow) Also a fair amount in the entheses bones around the knees. One of the "little" things that occurs to us is Bone marrow Edema.
It has been suggested that transient osteoporosis or the bone marrow edema syndrome may be the initial phase of femoral head osteonecrosis but there is not a lot of radiological or histological evidence to date to support this hypothesis. (That would be CRP and ESR among other things)
STIR sequences done an MRI help and we are starting to see a pattern to stages of femoral head necrosis. On the other hand structural damage of the head seemed to result in the later appearance of marrow edema and the development of pain, suggesting that the edema pattern is a secondary reaction associated with the inflammatory response to subchondral fracture.
The phenomenon of transient bone marrow edema syndrome (BMES) has started to receive attention latley. It is most commonly found in the same area particularly the hip joint. At first it was thought to be the same as transient osteoporosis (another gift of AS) and the start avascular necrosis. Sometimes that is the case but not always. Apparently it was with Seenie
However, the onset of radiological osteopenia within weeks of clinical symptoms distinguishes transient osteoporosis from BMES, although both get better on their own only to occur and reoccur.
More the case I suspect is that in reading recent studies there seems to be pretty good evidence that marrow edema in osteoarthritis joint is strongly associated with both pain and disease progression. Possibly an answer to why so many of us have OA on top PsA. In a large series of arthritic knees, they found bone marrow lesions in 77.5% of patients with pain, compared with only 30% in those without pain.
And here is an intesting tidbit that may help sort this out (and if not this some other things) Patients with osteoarthritisoften report no or minimal pain while moving about but considerable pain after activity, especially at night. These delayed responses can be explained by Bone Marrow Edema as they reflect the time it takes for the marrow spaces to react. Thats also the time an ESR or CRP should be drawn. M ost of us feel some better by morning except the whole stiffness thing.
Edema of the bone marrow has also been observed in patients with painful, transient regional osteoporosis, which is usually symptomatic for 6 to 12 months.
There is some work being done to develop MR imaging as a screening tool for identifying patients with marrow edema and high risk of arthritic progression, but we are not there yet. I know that a couple of our members are on top of this imaging stuff and maybe can pipe in.
Anyway after all of that, its worth a discussion with your Doc. A lot of Rheumys don't consider Bone Marrow Edema a part of our disease process yet although many do. It may be that you need to seek answers from an ortho.
REally interesting, Lamb, even if I didn’t understand it all. Something stood out for me. Initially, when they x-rayed my hip, the radiologist was sure that it was Avascular Necrosis, and he identified all kinds of features consistent with AVN. But it wasn’t.
And I do believe that bone marrow oedema is something that I have. It was identified in my feet when I was MRI’d. I’ve wondered if BMES was what gave me the waist-down aches for years.
A friend of mine who also has PsA, osteo and fibro keeps telling me to push for an MRI because of the possibility of bone marrow oedema. Might as well ask the question when I'm next at the hospital.
Piled higher and deeper, loved it! Let me add this to the SED rate mix. Around 2004 I found a tick in the bend of my left knee. A few days later, the target rash appeared. Not knowing any better, I didn't go to the Dr. until I felt like I had the flu. By then the rash was gone, my SED rate was well over 100 and stayed elevated from that point on. I, of course, tested negative for Lyme. I believe this to be the trigger for my PsA. It took finding the right PC to suspect that I may have something going on, he thought AS due to my spine, and get me to a rheumatologist. I had my latest rheumy visit last week, talked to the nurse yesterday and for the first time in 10 years I now have a normal SED rate. That is because I now have the right mix of meds. Other than my spine, the only joint damage I seem to have suffered are in the first two fingers of my right hand. Could the amount of damage done by inflammation be based on the individuals body to handle it? Also, within the first two months after the tick bite, I suddenly put on 40 pounds. Have I been able to shed those 40 pounds? No. Inflammation related maybe? This disease is also extremely nerve wracking and frustrating. I did buy The Facts and am reading it. Very enlightening.
Wow, Tirezza. That’s interesting. I’m particularly interested in the 40 lb. I gained a lot of weight in the period of time immediately after my mystery symptoms appeared. The sausage toe, the aches and pains …
The Facts is an excellent resource. I hope they do a revision soon, as the state of the research and treatment is changing quickly.
Seenie, my husband says it's wishful thinking. :) I think there is something more to it. The Dr.s I had it the time were bewildered at the weight gain, too. Nothing else in my life had changed.
Seenie said:
Wow, Tirezza. That's interesting. I'm particularly interested in the 40 lb. I gained a lot of weight in the period of time immediately after my mystery symptoms appeared. The sausage toe, the aches and pains ... The Facts is an excellent resource. I hope they do a revision soon, as the state of the research and treatment is changing quickly.
Thanks everyone, some really interesting stuff and very different experiences. Lamb, great information, although it's going to take a few more attempts and like Sybil said a sniff of the whisky bottle to get to the bottom of it. My brains hurting now, so I think I'll sleep on it and have another go tomorrow. It might help if I had one of those 'Piled High and Deeper' things. Lamb, that made me chuckle, so at least I'm going to bed with a smile on my face.
