Sjogren's help needed

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Date Joined Mar 2017
Total Posts : 1
   Posted 3/31/2017 12:11 PM (GMT -6)   
So I was recently diagnosed (last month, 2 months after finally having symptoms checked after they all came out full at one time to show something was obviously wrong) with Sjogren's (secondary, no positive antibodies), Raynaud's (secondary but full disease) as well as a connective tissue disease (still differentiating between Mixed Connective Tissue Disease, SLE, or Dermatomyositis) which was very odd to have gotten such a quick diagnosis and one such early at age 25, especially for a male. But I've been put on Plaquenil and CellCept, but nothing at all is helping the Sjogren's issues. I asked my rheumatologist at the last appointment for possible medications for the Sjogren's and he stated that the Plaquenil should help and that he wanted to focus his attention on getting a 100% diagnosis on the connective tissue disease as that is my worst issue right now before focusing on what will help the Sjogren's the best. He believes the Plaquenil will help but now going on 3 months of using it (yes, it can take up to 6 months to fully work) and I'm having no luck at all with relieving the symptoms. My fatigue is a lot better for sure, but the dry mouth is still terrible. My eyes are still itchy and dry and irritated, but the dry mouth is the worst part. I'll wake up in the morning with my throat hurting from being so dry, throughout the day it'll get slightly better because I drink TONS of water, but it's still pretty dry to the point that my teeth will hurt time to time but by night time (which oddly is when my symptoms get worse) I start 'losing feeling' in the tip of my tongue (hard to explain, I still feel things but the feeling is dulled to an extent) and my tongue will burn on occasion due to my mouth being so dry. Does anyone have any at home things that will help until I can talk with my rheumatologist more at my next appointment in May? I know it's pretty impossible to make it 100% better without meds, I just need something or some ideas that will help alleviate the symptoms even slightly until then.

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Date Joined May 2005
Total Posts : 7720
   Posted 4/1/2017 7:00 PM (GMT -6)   
Dry mouth can be addressed with Biotene products - there is mouthwash, toothpaste, and maybe even gum that addresses the dry mouth. Even if you eventually get medication, Biotene is still recommended to sooth the irritated tissues.

For dry eyes, use "lubricated eye drops" - like GenTeal or Tears Naturale II. Do NOT use eye drops with medications or remove-the-red properties or preservatives. You want preservative-free lubrication.

I'm sorry that your rheumy didn't suggest these to start with -- neither Plaquenil or Cellcept address the dryness, and most good rhuemies will tell you about this stuff immediately.

Let us know how it goes.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
"Life is far too important to be taken seriously." - Oscar Wilde

Post Edited (Lynnwood) : 4/1/2017 7:11:06 PM (GMT-6)

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