← Return to Sjogren’s Syndrome – Introduce yourself and meet others

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@hannahbernard1

Oh wow, best wishes to you while you heal. I am so sorry to hear of your troubles!

So far, I have only used Prilosec as a long-term medication for Sjorgens but have tested steroids in the past, but that is not something I am interested in taking full-time quite yet. If in the future I have no other options, then I will, but as of now, the gain is not worth the side effects. I am planning to try Prilosec again in the near future; I am just waiting for my next rheumatology appt. to bring this up with my doctor. I was very recently diagnosed with burning mouth syndrome. I'm curious if you have done anything to help with dry mouth. I have tried a lubricant spray, sour candy, and mouthwash, but I still have some trouble with dryness. I seem to get frequent bloody noses because of how dry my mouth/nose is.

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@hannahbernard1 I use a gel I buy at Walmart for the nose called Ayr I use a q-tip to apply it in the nose. My rheumatologist has me on Pilocarpine for the Sjogren’s you definitely have to drink enough when you take it or you will start sweating( I had to go work at a factory when Covid hit and I just started the pilocarpine they were doing temperature checks and I had just taken the pill of course my temperature was high 15 minutes later I was good) . I also tried Cevelimine and the sweating was 3 times worse so I’m back on the pilocarpine. I have to also use nasel sprays. I keep gum in my mouth to keep my mouth moist which is bad for me I tend to not drink enough. Heartburn specialist said if I have that stomach surgery no caffeine which I only drink a pop if I go to a restaurant I’ve had to many kidney stones and I can’t drink plain water so I use the mio and crystal light flavors . I hope some of this helps guide you if you have any other questions reach out to me maybe we will both learn something now for me to research some of the other issues you have and see if their causing me problems. I just love this sight it is so helpful and get to meet a lot of knowledgeable people that cares