@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.
@AbrahamAubry 5/n Targeted synthetic DMARDs: tofacitinib, baricitinib, upadacitinib, filgotinib.
Biosimilars: biological pharmaceuticals that are almost identical to an original product manufactured by a different company (e.g. CT‐P13 is an infliximab biosimilar).
5/n
@AbrahamAubry 6/n The above list is taken from a planned Cochrane review study. It has some of the same problems commonly seen in Sjogren's literature. In practice which DMARD gets selected can depend on practioner specialty & their familiarity w/ certain drugs & which organ damage. 6/n
@AbrahamAubry 7/n is being treated as well as whether a practitioner can get a drug authorized by insurance. The drugs I was thinking about when I wrote that post was hydroxychloroquine, Rituxan, IVIG & immunosuppressants mycophenolate & azathioprine. 7/n
@AbrahamAubry 8/n The Sjogren's Foundation clinical Practice Guidelines for systemic #NeuroSjogrens are currently being worked on, but the general & Pulmony CPG's have been published & can be found here: sjogrens.org/researchers-pr…
@AbrahamAubry 9/9 Note that the Sjogren's Foundation Clinical Practice Guidelines do not recommend TNF alpha inhibitors for sicca. I recommend perusing the Clinical Practice Guidelines for Sjogrens.
@elisa_comer@Breanna34652334 Kismet! Sjogren's patients complain of scalp itching. Often it is related to dryness. My scalp itching was trigeminal small fiber b/c when I dragged the pin from back to front the change occurred @ imaginary line bt my ears at top. 1/n
@elisa_comer@Breanna34652334 Later midline facial pain so severe I couldn't wear glasses began. Then into upper teeth & tongue. All trigeminal small fiber. I was trying contacts so I could see when I realized I hadn't rinsed cayenne pepper off my fingertips. I felt no pain in the eye, just the powder 2/n
@elisa_comer@Breanna34652334 3/n Since I lacked corneal pain sensation I could not use glasses. 2 yrs I couldn't see well. I started IVIG for relapsing weakness & after ~9 Mos the face pain got better. What a godsend. I could wear glasses, see & get food past my upper teeth again. 3/n
CISMP- chronic inflammatory sensorimotor polyradiculitis is an immune mediated form of CIDP that is restricted to the spinal nerve roots & not the peripheral nerves. It presents the similar to CIDP & can respond to IVIG. SSEP's, not NCS, are needed to diagnose CISMP.
Do you get flares of weakness in your legs, progressing over wks where you catch your toes & get weakness in your thighs? + strange feelings in your legs at same time? Neurologists will look for low reflexes & ✔ EMG/NCS. When NCS are normal usu thay say it's not CIDP. 2/n
3/n. In CIDP there is demyelination (loss of insulation) of the peripheral nerves. But what if demyelination only occurs at the nerve roots by the spinal cord? Here the NCS (nerve conduction studies) are normal but patients have damage & need treatment to avert more damage. 3/n
@marybrauer11 Sign up for: smartpatients.com/about
A moderated online forum with a vibrant Sjogren's community many w/ dysautonomia. Sign up for both topics. Ask anyone if they know MD's near your area they felt did a good job. "Night Bird" keeps list of MD's patients approve of.