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Maybe taking part in a clinical trial

Started by SjoGirl, January 17, 2017, 09:13:06 AM

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SjoGirl

January 17, 2017, 09:13:06 AM
So happy to receive news from the Sjogren's Foundation about a clinical trial for a new drug for SjS that is being run in my area. I meet with the doc/researcher next week to learn what drug they are testing, the potential benefits of the drug, and whether or not I qualify to participate in the trial.

Fingers crossed because my nervous system is being attacked by this disease. I am taking an increasing amount of meds to handle the nerve issues (some of which are also from spinal arthritis) and would love to find a systemic treatment that might halt this seeming disease progression.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

Pete0211

#1
January 17, 2017, 02:05:30 PM
I'll keep my fingers crossed for you!
Male 49 y/o; Undergoing Primary SJS diagnosis process; Cevimeline, Ubiquinol, Restasis

SunshineDaydream

#2
January 17, 2017, 02:42:51 PM
I hope you qualify to participate in the trial and are interested in doing so after learning more about it!
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

Madison Granny

#3
January 17, 2017, 05:49:50 PM
Good luck with the clinical trial.  I have been tested by the Oklahoma Medical Research project for Sjogren's.  The ask me to take part is a clinical trial for a new drug but I had to decline because I have stage 3 kidneys disease.  I can only test things like eye drops or creams or ointments if any are developed.
Primary SJS, dRTA, Osteroporis, OAB, stage 3 kidney disease, hypothyroid and high blood pressure.  Medicine I take are plaquenil, bicarb, prolia, synthroid, toprol and amolipine, citracal and vitamin D.  I use Arex and Azasite and Prolia.  I also have Reynaud's and osteoarthris of the toes

Sharon

#4
January 18, 2017, 02:34:48 PM
Hope you qualify!
Keep us posted and let us know which drug it turns out to be.
Sjogren's (+ RA): positive ANA, RNP, RNP-A, APCA. Severe eye dryness + inflammation, multiple sensitivities and allergic reactions, fatigue. 
ORENCIA, Restasis, Anti-inflammatory diet, Vit. D & C, Ubiquinol 100mg, Omega 3....
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