I was glad to see that my earlier post discussing Sjogren's syndrome and peripheral neuropathy generated a lively conversation here in the comments, on Twitter, and in the email responses that I received.
I touched a nerve, it seems. Har har.....
(Pain really isn't a funny topic. Sorry about that. Bad Julia. BAD Julia. Limping around here with chronic pain issues of my own may have impaired my judgment.)
Pain caused by damage or disease to peripheral nerves is a serious issue for a great deal of sjoggies. In view of the recent activity regarding this topic, the conclusions of another study caught my attention. What I found of particular interest is that the authors of this study chose to examine the relationship between neuropathic pain and serum markers for Sjogren's syndrome.
It was titled "Pain Severity and Neuropathic Pain symptoms in primary Sjogren's syndrome: A comparison study of seropositive and seronegative Sjogren's syndrome" and authored by Barbara M. Segal MD, Brian Pogatchnik BS, Lisa Henn MS, Kyle Rudser PhD, Kathy Moser Sivils PhD
and found here.
Conclusion:In other words, the authors of this study feel that primary Sjogren's syndrome patients who do NOT have blood auto-antibody markers such as SSA-Ro/SSB-La experience neuropathic pain in equal prevalence to seropositive sjoggies, but the intensity of the pain is perceived as higher and the the effects more limiting than those who are seropositive.
Chronic pain is pervasive in both seropositive and seronegative pSS patients, while pain severity and functional impairment is greater in seronegative patients. Neuropathic pain is equally prevalent and is the predominant pain phenotype in patients with moderate to severe pain. Accurate assessment of pain phenotypes is needed for more effective management of chronic pain in pSS. The focus of future research should be to standardize assessment of pain and to identify the factors contributing to more severe pain in seronegative patients.
Interesting.
3 comments:
I should show this article to my former rheumatologist, who told me that seronegative patients (like me) have a milder form of Sjogren's and should be glad that they aren't as severely affected. She was unconcerned about my pain and impaired kidney function. Yes, I did find a different rheumatologist who has me seeing a nephrologist as well. Seronegative patients are not necessarily less sick than those who are seropositive.
These articles are coming at a very good time for me... I will be changing Rheumy's so I don't have to travel 6+ hours. I am excited about this. But it also makes me realize I want to be more proactive and get more effective help. Thanks.
ToOdLeS.
With no disrespect intended, my immediate response as a serum positive primary sjogren's patient is that I am extremely fortunate. Having waited for 20 years to get a diagnosis, I can testify that the relief, acceptance and understanding that comes from a definite diagnosis is incredibly affirming and comforting, To me it is logical that serum negative folk do it much harder. PS. Wish me luck. Now on my third try to pass posting test. It's all way too hard for someone with reasonably severe primary sjogren's. I can't even read the numbers with magnification and glasses!. 4th try. Hopefully this one will work! I can at least read weird shaped letters and the numbers are large and clear enough to make sense.
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