Sjogren's and Benlysta study

Hi Everyone. Just a bit of info. My rheumy told me that the makers of Benlysta (Glaxo-Smith-Kline) are conducting a study of the effectiveness of Benlysta on Sjogren's. So far it seems to be suppressing systemic Sjogren's, but does nothing for dryness. Well, dry mouth, eyes, nose, and vagina are my biggest complaints with Sjogren's. I've been getting Benlysta infusions for many months and I can attest that it does nothing for my dryness and I mean Nothing. It has very slowly been improving my quality of life with Lupus, which is my primary illness, and that's a great thing! Love, Butterflake

Thanks for sharing info on potential new drug for sjogrens - I have been hoping some other medications would be approved at some point for treatment or management of sjogrens. I take Evoxac for dryness and it really helps (cevelimine is another name for it). I would love to try a different medication other than plaquenil to see if I could get even more relief!

I also am glad your lupus is improving, Are you currently taking plaquenil for your sjogrens?

Hi I am new to this site but have had the very unfortunate SS and lupus for 8 years. Took over a year and half to diagnos I basically had to do it myself. I kept telling them, it's auto immune....... I saw some older posts from a woman who complained about her bad breath from SS or she suspected but had so many issues with it even at her work....I can relate as mine stayed in remission until I had a hysterectomy in 2010, afterwards has never been same. I too retired early from my job as a director at a college, the embarrassment was just too painful. It's a real issue with severe Sjögren's syndrome. Thyroid disease does not help the matter. It is the overgrowth of a specific bacteria which is why you see some improvement on antibiotics, but it returns as soon as you stop them. I have tried everything, all products, Otc and prescription......nothing stops it because even if you have perfect oral practices I use water jet flossed 3 times a day.......you still cannot reach the bacteria accumulated in throat and lungs......therefore it seeps out of your entire airway system at all times......it is like having a sewer running, very disabling and exhausting from anxiety I take evoxac plaqunil cell crept prednisone aspirin Prevacid and more very depressing....I'm 53 also tried hormone replacement bc that pushes the sjogrens into overdrive when you have no natural hormones........Please be warned if you consider a hysterectomy......it will get worse. Anyone else having this problem....so overwhelmed to say the least

Rheumatology referral physician (fellow resident and attending at Vandy) do not believe I have Sjogren's.  But I am still experiencing very dry mouth, lips, some mild/moderate eyes.  The long list of blood and urine labs came back negative and that, along with physical examination, still showing pooling of saliva and no redness or inflammation of joints led to the non auto-immune disease diagnosis.  That is a good report.  However, I have stopped one medication and still have the dry symptoms.  It's so bad that food is now bread/sandwich feels like it's stuck in dry throat.  I am eating ACT mints, smart mouth  dry mouth gum, OraCoat mints at night, biotene toothpaste, biotene rinse and drinking water all the time.  I've lost appetite.  GI and Rheumatologist now have told me to go to ENT for the mucus lump feeling in my throat.  Everyone is sending me to someone else?

I couldn't find website to purchase the dry mouth product that you mentioned Dr. Daily makes. Would you send contact/website information for ordering product. I use the TheraBreath dry mouth mints but prefer the ACT dry mouth lozenges. Sometimes the TheraBreath mints make me a little nauseous. Thank you for your suggestion look forward to contact for Dr. Daily dentist product.