Sjogrens patients, saliva issues, flares?

Just my experience….I’ve started taking K2-MK7 because of osteoporosis and have noticed my saliva issues have improved. K2 is known to help with dental problems but I can’t find any info about actual saliva production increase.

I have Sjögren's & Myasthenia. My doc put me on " Cell-cept!"
NO MORE DRY MOUTH, Dry Skin & I have TEARS! Ask about CellCept to see if it might eooreh for you!♥️

Thanks so much for the info! Interesting,, that’s off label. Looks like it’s used to help people who have had transplants. . Is it an oral medicine or injection? Infusion? I’ll ask but I suspect he won’t jump from cevilemine and hydroxychloroquine to cellcept.

CellCept is a daily pill, and it’s used for some autoimmune disorders. It’s on the potent end of the immune suppression spectrum so there could be reluctance to prescribe something so strong unless the Sjögrens is also accompanied by significant joint pain, disability or otter systemic problems not responding to milder meds. I hope you get some other good advice on the dry mouth issues. It’s awful having little to no saliva!

Thanks , I think I’ve seen you post about k2/mk7 before) either here (or maybe on another site?) I had minimal osteoporosis last year. I have some and it’s on my my minf to start taking it again. Given all my surgeries & time recuperating ( with little or no weight bearing exercise on and off from April through July 2023) I suspect it’s probably something I should take. But I’m having a hard time swallowing pills , so haven’t added it back yet. Certainly can’t hurt for likely dental problems with no saliva! Thanks again!

I have Sjogren’s, Scleroderma and Reynaud’s Phenomenon

I was prescribed Mycophenolate Mofetil twice daily for two years (high dose (360 mg.) which was hard on my system and stomach. Dose was changed to Mycophenolate Acid (which is an enteric capsule and less senstive to stomach distress). Dose has been reduced to 360 mg. once daily. Both of these meds are the generic version of CellCept. They have had no effect on saliva production. I’ll continue on latter dose until blood work indicates it’s not effective at reducing the inflammation from these diseases. I tried Civemeline for two years: no effect on saliva production. My mouth is a desert and as any one with these diseases knows, it’s more than awful, it’s horrific. Cannot talk without water, difficult to swallow, effect on teeth and gums is a serious issue though I’m fastidious about dental care. I have lost taste and smell as a result of these diseases and the dry mouth aggravates the condition dramatically I use Biotene dry mouth moisturizing spray as a fallback. Am currently experimenting with Aquoral artificial saliva protective oral spray (it was featured in one of the Sjogren’s magazines). Too early to give an opinion. It just lubricates the mouth but doesn’t cause the production of natural saliva. I saw a referral by someone on this site to a product called SaliPen billed as a high-tech mouth moistener. I ordered recently and am using in the HOPE that it will stimulate my salivary glandsmay take up to 8 months according to User Guide. It’s an electrical salivary stimulator system. It’s for use in patients with Xerostomia (dry mouth). Other than these options, I pray that I can be a candidate for Stem Cell therapy.

Yes I have the muscle pain & joint issues . Most people don’t understand how awful full blown sicca symptoms feel. I’m pretty sure te doc will try something less potent first . I’ve probably had this for at least 2 years, but I was only diagnosed mid October, 2034. I’d love to feel better, but all the more potent treatments usually come with side effects. Be well

Have you heard of Sjogrens Advocate and Smart Patients? Both websites are heavy with information for Sjogrens. Smart Patients is by a doctor who has Sjogrens and is similar to Mayo Connect. I hope they don't mind me posting.

Yes, I mostly post there. I’m
Relatively new to Sjogrens . Things not going well , so getting info in various places . But using my judgment about tips from patients. Need to run the ideas past my doctors for now.

@cblue something I found very helpful at the beginning was a full on autoimmune protocol diet. It was very hard to do at first because it’s so restrictive. I’ve eased up a bit now but sugar, highly processed food and grain are absolutely no good for me. I’m researching the carnivore diet but right now I’m
Just restricting myself to less than 50 carbs a day. Stiffness is way down.