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Sjögren’s syndrome severe dry mouth with loss of taste. Also dry eyes
I have tried pilocarpine on two occasions. The side effects were unbearable, cold sweats to the point of shivering, then hot sweats that left me feeling clammy
Just to get saliva I use x-pur gums, x-pur pastilles, Thera breath dry mouth lozenges. Also pur mints. I use biotene dry mouth spray and biotene mouth gel. I chew sugarless gum and lifesavers.
Now I am starting to feel nauseous, not sure if it’s because of all the above.
Life is not as much fun, when you have loss of taste, so this has effected my mental status.
Can anyone relate or have and more helpful suggestions?
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I can certainly relate to loss of taste and smell. It’s been almost 3 years for me now without it. It is a pretty dull life, not much to look forward to as far as food goes, then add that I have several food sensitivities along with no taste or smell. It’s a drag! Lost is 2 days into Covid in December of 2022. I’ve had 7 Stellate Ganglion Block injection, nothing so far…
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2 ReactionsI have the same problems. I take Plaquenil and Systane eye drops. At first I was treated for lupus and Sjorgens.
Now the diagnosis is connective tissue disorder and Fibromyalgia.
Symptoms vary. Deal with extreme fatigue.
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2 ReactionsI've had Sjogren's for 30 years and in 2023, I was diagnosed with Extranodal Marginal Zone Lymphoma on the base of my tongue. So yes, if you have Sjogren's, you are at an increased risk for developing lymphoma. I had radiation and am thankfully now in remission. I also have Interstitial Lung Disease which is also associated with Sjogren's. I am on Plaquenil and I use refresh eye drops and the Biotene mouth rinse which really helps my dry mouth at night.
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3 ReactionsThank you for sharing!🙂
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1 ReactionAny problems with loss of taste?
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1 ReactionThank you for your information, I really don’t know much about these diseases. I’ve been having pain on the bottom of my heel, my daughter is a PT and gave me exercises to do for that. She said plantar fasciitis but I haven’t seen a doctors about it.
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1 ReactionIf you don’t mind me asking….do you know what test determined Mixed connective tissue disease !
I was diagnosed with Systemic lupus and Sjögren’s over 30 years ago. Up until now I could use lubricating eye drops which don’t contain preservatives and a gel at bedtime. This last year he have been in so much pain with my dry eyes and nothing worked . I am using hylo forte eye drops every hour and Vitamin Pos eye ointment at bedtime as I am now waiting for the Red Cross to take my blood and make Autologous serum Eye drops that are all the good nutrients that can repair the cornea . I hope it works as I can’t enjoy my life with the constant pain and burning in my eyes. I have to flood them with single vial tears in the morning to get my eyes to open. This is a new treatment and suppose to work very well. I hope they work for me.
Autologous serum Eye drops have worked great for me. They may see expensive at first, but considering how many vials you get, they end up being cheaper than the prescription drops.
Hi, can I ask how you were diagnosed. I’ve been positive ANA since 2017 and tests related to connective tissue and Sjogrens. I have severe dry mouth, eyes. I get tubes in my eyes every six months and I have prescription toothpaste because my teeth are getting terrible and I don’t eat sugar. My levels are slightly elevated but I don’t want to be assigned a diagnosis just because the two tests are slightly elevated. I think it’s more going on. I’m severely allergic to most meds and just about anything I put on my face. My cheeks look like blush but not a butterfly shape at all. My skin extremely sensitive. I have Raynauds and gastroparesis. I don’t want them diagnosing just because of slight elevations. Has to be more definitive testing.