Discover and read the best of Twitter Threads about #NeuroSjogrens

Most recents (3)

@mariaj_morenom @AbrahamAubry @SEReumatologia @SMurcianaReuma @reumalorca5 @aesjogren @CatSjogren 👋👀⬇️🚨
Paradigm shifting article in the Green Journal of Neurology courtesy of cooperation between Neuro and Rheum at hosp in Hanover Germany. A cohort study of 512 "primary" #Sjogrens presenting to Neuro and to Rheum were evaluated for "strictly selected neuro symptoms." 1/n
@mariaj_morenom @AbrahamAubry @SEReumatologia @SMurcianaReuma @reumalorca5 @aesjogren @CatSjogren 2/n NB many of the most common neuro accompaniments to Sjogrens WERE NOT tested for (or were not reported) in this cohort including autonomics, HA, hearing loss, trigeminal involvement etc.) Despite this, 46% (!!) of #Sjogrens pts are #NeuroSjogrens patients.
@mariaj_morenom @AbrahamAubry @SEReumatologia @SMurcianaReuma @reumalorca5 @aesjogren @CatSjogren 3/n IMPORTANTLY, the authors take pains to note
1) Neuro involvement has been v underestimated
2) The disease course is more severe than previously anticipated BUT responds well to immunosuppression
3) ESSDAI issues--multiple neuro probs w same level activity only scored once so
Read 28 tweets
#Dysautonomia damages ur body's automatic pilot (AP) system that controls where blood goes, how food processes/moves, temperature & glucose regulation, BP, HR,sweating etc. W AP damage there is no homeostasis, no "static" issues. Problems shift & change & r unpredictable.
#Sjogrens commonly has #AutonomicNeuropathy. Most patients have lost the ability to predict how one feels day 2 day. Hr to hr. Even minute to minute sometimes. The days of predictable baseline function are gone for many #NeuroSjogrens patients.
Loss of this baseline functionality in #NeuroSjogrens #dysautonomia erodes ability to follow thru w plans. Steals ability to work full time or at all. Wears on friends/family. Eventually many are left disabled, unemployable, poor, alone & sadly unrecognized by MD's 4 many yrs.
Read 5 tweets
@AbrahamAubry Thread: Most DMARDS used in Sjogren's are those which have shown efficacy in related diseases and are off label uses. In part because Sjogren's gets so little research attention & systemic aspects of Sjogren's are seldom emphasized as much as sicca. 1/n
@AbrahamAubry 2/n In regards to NeuroSj use of classification criteria as selection criteria in studies excludes close to half of NeurSj patients. Even w/ limitations noted one can find smaller studies on DMARDS in Sjogrens. Here is a list of DMARDS: 1.hydroxychloroquine/chloroquine 2/n
@AbrahamAubry 3/n azathioprine, cyclosporine A, cyclophosphamide, leflunomide, methotrexate (oral and subcutaneous), and mycophenolate.

Biologic DMARDs: tumour necrosis factor (TNF) inhibitors (adalimumab, certolizumab, etanercept, golimumab, infliximab)
3/n
Read 10 tweets

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