I was diagnosed almost 3 years ago with Lupus SLE, no major organ involvement. My question is: does anyone else have non inflammatory joint pain? I can't recall a time where my blood work showed increase in inflammation markers, but my joints hurt. My knees turn red, my thigh muscles (bones) aches something awful. Everything else points to lupus.
Thanks!
I just found this article that affirms my situation!
http://www.arthritis-treatment-and-relief.com/elevated-ana-normal-sed-rate.html
"The ESR is a means for estimating disease activity in rheumatoid arthritis. The ESR value tends to correlate with clinical disease activity and to parallel symptoms such as morning stiffness and fatigue, although joint examination is also useful in assessing joint inflammation. The sensitivity of an elevated ESR value is approximately 50 percent in patients with signs of rheumatoid arthritis. However, the specificity of an elevated ESR is quite low, limiting its use as a diagnostic test.
The ESR is often normal in SLE even in the face of active disease. Therefore, use of the ESR to monitor disease activity in SLE is not advised. Markedly elevated ESRs in patients with SLE may signify the presence of infection."
Seems to be the same issue with me. My hands and other joints are very tender and hot to the touch, but not swollen and my esr is normal so rhuemy has quit going by it. I have sle lupus.
I hate that you are going through the same thing, but I fight with myself everyday as to whether I really have lupus or not because my lab numbers are so different from textbook lupus So, it's reassuring to have someone understand. On the surface (no pun) my symptoms seem a no brainer for being lupus SLE, but I've never had a high SED rate, and after being on plaquenil for a couple of years, all of my other numbers are negative, even thought I still feel bad most of the time and have no energy. I keep feeling like it's all in my head.
I don’t wish this disease on anyone but it helps to hear that others bodies does the same stuff as mine! My last appointment, in tears I asked my rheumy if he was sure this was my diagnosis? I have 11/12 criteria and every serious diagnosis that lupus causes but my antibodies stayed borderline or negative! When I finally got to my rheumy, 25 years after the first symptoms- he started treating me! I’ve been on chemo, plaquenil and prednisone now! I continue to have symptoms and horrible flairs but in a year- I’m now not bedridden! I’m 100% better! For myself though, I wanted the blood work to prove it to me! My sed rate will be only 2 points above normal yet my heart is inflamed, lungs, uterus and kidney along with red hot visibly swollen knees or ankles??? What the heck? My rheumy kept asking why I was so worried about the lab work and said," let me worry about it!" I said, I don’t want to take this kinds of meds if I don’t need them? He answered, " are they helping?" I said, " majorly!" He kept saying," ok- what’s the question?" He was being kind but I don’t think he understands that the normal population of doctors don’t take you serious unless you have the labs? He kept saying, " be patient!" I left his office this past month and frustrated with new medications needing added, I had the same ole lab work that frustrates me! Everyone asking if I tested positive yet! I broke down and cried with frustration! I guess it scared me so much to be on " chemo" type drugs- steroids etc!
Five days later, rheumy called to explain my sle lupus was now active and he was going to double my medications and add daily steroids etc! My Ana, anti- ds DNA elevated high and two different antiphospholipids! My sed rate in a active lupus again and I feel horrible is now still barely elevated! My lab work has never correlated with my disease! I feel horrible right now but I can honestly say- I’ve felt much worse with negative lab work??? Having the disease sucks but the mind games it plays- is overwhelming!