I have Sjogrens and dryness is progressively getting worse.

Posted by dunbun13 @dunbun13, Jan 30, 2024

My question ….. is anyone here taking Pilocarpane. I would like to know about this medication. Trying to get more knowledge before asking the Dr. About it.

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I have taken Pilocarpine for 7 years and had great success for dry mouth. Doesn’t do much for dry eye but I use drops for that

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I have Sjogren's also and am taking IvIg for over a year. I have recently lost my Rhueamatologist (#3) who was very knowlegable. One of my nuerologists (he did my Small Fiber) has a family member with Sjogren's and is learning all about it. Thinking about asking him. I see him anyway for the neurological part and he is carrying my IvIg script. I also take Retuximab twice a year. Anyone try that?

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MS 40+ yrs, RA, Sjogrens, Lupus, other autoimmune. Lots of steroids over yrs, but treatments now involve Rituxan every 4 mos past 10 yrs-definitely can tell my symptoms flaring when getting close to infusion time! For Sjogren every day symptoms, Pilocarpine takes the edge off dry mouth, but must have dry mouth lozenges & bottle of water @ all times. Dry eyes- tried everything, but Refresh Optive my go to every 4 hrs or so, sometimes gel drops @ night, cool washcloth 10 mins or so twice day when they really flare. Humidifier always going for all symptoms. Hope this helps. Good luck with your symptoms. You may find there is a lot of trial & error on working with them as they may come & go so often.

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