Sjogren’s Syndrome – Introduce yourself and meet others

Posted by cmtg @cmtg, Aug 20, 2016

I have been diagnosed with this and I’m in pain most days and would like to have discussions.

@jmb73

Hi Clio, I have had Sjogrens most of my life. I was called "squinty" as a teenager because I blinked so much. Do you have a rheumatologist that really knows Sjogren's? I have found eating small meals- especially at night helps. For the pain, I use medical marijuana CBD. It helps with the inflamation. I can't take the usual medications for Sjogrens as my rheumy had me tested and I have a very low immune system. You probably know that your immune system attacks itself so you have to be very careful- especially with Covid around. If you get a flare, the best thing is to give in to it and just rest. If you fight it, then it lasts longer. Besides digestive issues, are there any other issues you have developed. Good luck and keep in touch. Joan

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The "autonomic" system goes along with this. I have sjogrens overlap with Mixed Connective Tissue Disease. Brain is important as far as resilience to adapt to symptoms and to care for yourself. It is not a matter of mind over body, and not making symptoms up. Autoimmune disease, for me, means that I do not necessarily catch things more easily, but rather that I get really sick when I do. I was on Methatrexate for years; still taking Plaquenil and Etodolac, a buffered NSAID. Non-processed diet, hydration and movement matter.

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@lucillem72

I was dx'd with an autoimmune disease after my 3rd child was born. The weird thing was I had painful joints when I was pregnant with my first child. I was going to my Chiropractor and he felt I might have had Chronic Fatigue. Went to a Rhuematologist and was diagnosed with Sjorgrens. There after I have had 2 bouts of Cancer. My worst symptoms are dry eye and itchy skin. I have tried plugs buy they didn't stay in. I use 2 meds for my eyes. Restasis & Paseo. I use any of the top non fragrant lotions for my skin. The brain fog is even worse since chemo. And the joint pain due to the Arimidex.

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Creams are better as they do not have the drying alcohol. I like Eucerin Skin Calming cream, and others swear by CERAV/

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@cmtg

Positive ANA, did not have the gland biopsy. Plaquenel prescribed have not taken yet. I have the dry mouth, dry eyes which are typical and lately nausea.

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I’ve had positive ANA test as well. I was diagnosed with burning mouth syndrome and central sensitization at Mayo a few years back. I’ve been having some other skin issues and went to local dermatologist. She suspects form of lupus based on symptoms and bloodwork and mentioned taking Plaquenel. She said it had been known to help with Burning Mouth Syndrome. Has anyone taken for their and if so was it helpful and were there any issues or side effects in taking? At this point, I’m fearful to take it and waiting to see a Rhuematologist to do further testing.

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Many years ago I had a positive ANA test and the rheumatologist said that showed I had lupus, but since I did not have the symptoms for that, I did not have it. He then said he did not know what I had. At Mayo I was diagnosed with burning mouth syndrome, but I was given no answer as to what to take for it. I finally found a doctor of pathology at our local dental university who said he had only one med that had helped some of his patients. I have been taking his recommended drug, Clonazepam (Klonopin).5 mg, twice a day. He told me to try 3 times a day, but did not think I would be able to handle that because I am small. In the beginning, it did make me sleepy and I take it twice a day. I am accustomed to it now and only take 3 if I am lying in bed at night and my mouth burns, which is rare. Then I know the next day to take three. It has helped me tremendously and my PCP handles my refills now. My PCP indicates on my prescription it is for burning mouth. You might try the Clonazepam because it really has helped me. I wish you well in your search because I know a burning mouth can make your life miserable. @joybringer1

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Hi
I was diagnosed at Mayo almost 7 years ago, they did a lip biopsy which was positive. Since then I have developed severe dry eye, optic nueritis and other issues

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hi! I have a mass in/on my submandibular salivary gland, determined from an ultrasound. I see a head/neck specialist this week.
anyone else? and has anyone developed sjogrens or another autoimmune from any kind of toxic exposure? I have had fibromyalgia for several years that I am treating with Cymbalta.. thanks! Nancy

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@nanke99

hi! I have a mass in/on my submandibular salivary gland, determined from an ultrasound. I see a head/neck specialist this week.
anyone else? and has anyone developed sjogrens or another autoimmune from any kind of toxic exposure? I have had fibromyalgia for several years that I am treating with Cymbalta.. thanks! Nancy

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Hello @nanke99 That must be scary to have a mass in your salivary gland. I’m so glad you’re going to have an ultrasound and will get some more info. You also mentioned toxic exposure and autoimmune disease. Are you concerned that you’ve had an exposure? Be sure to ask the head/neck specialist.
After your US, will you let us know what you learned?

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@destinnana

I’ve had positive ANA test as well. I was diagnosed with burning mouth syndrome and central sensitization at Mayo a few years back. I’ve been having some other skin issues and went to local dermatologist. She suspects form of lupus based on symptoms and bloodwork and mentioned taking Plaquenel. She said it had been known to help with Burning Mouth Syndrome. Has anyone taken for their and if so was it helpful and were there any issues or side effects in taking? At this point, I’m fearful to take it and waiting to see a Rhuematologist to do further testing.

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I have primary SS and have been taking plaquenil for almost four years. It was prescribed for a new diagnosis of inflammatory arthritis. Currently my tongue is cracked and burning and came to look for help. This doesn't happen often so I can't say plaquenil helps or not but my other symptoms are better than before I started. Not completely but better so it might be worth a try.

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@mtnyankee

I have primary SS and have been taking plaquenil for almost four years. It was prescribed for a new diagnosis of inflammatory arthritis. Currently my tongue is cracked and burning and came to look for help. This doesn't happen often so I can't say plaquenil helps or not but my other symptoms are better than before I started. Not completely but better so it might be worth a try.

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@mtnyankee I’m hoping that other members in this discussion might have some good information for you. Has your doctor seen your dry, cracked tongue? It sounds like you may have dry mouth caused by the plaquenil. Are you using artificial saliva and drinking plenty of water?

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Hi mtyankee. You could try “all day mouth spray” (good at night next to the bed), and biotene mouth rinse for different points in the day. Both are xylitol products, so if you have any sensitivities to xylitol you would have to do it differently. Also your dentist might want to prescribe fluoridex toothpaste to prevent the increase in cavities secondary to low saliva. All these products really helped me.

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@mtnyankee

I have primary SS and have been taking plaquenil for almost four years. It was prescribed for a new diagnosis of inflammatory arthritis. Currently my tongue is cracked and burning and came to look for help. This doesn't happen often so I can't say plaquenil helps or not but my other symptoms are better than before I started. Not completely but better so it might be worth a try.

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So glad Plaquenil has helped your symptoms in general. I have had the same experience with Plaquenil. I have very dry mouth but I had it before I started Plaquenil. Maybe you have some type of fungus related problem in your mouth. I had to take Nystatin oral rinse and spit for a monilla fungus in my throat . I think the doctor would take a culture .

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@becsbuddy

@mtnyankee I’m hoping that other members in this discussion might have some good information for you. Has your doctor seen your dry, cracked tongue? It sounds like you may have dry mouth caused by the plaquenil. Are you using artificial saliva and drinking plenty of water?

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I have gut problems using the products for dry mouth because I can't tolerate artificial sweeteners. I am pretty sure tongue is not caused by the plaquenil because it doesn't happen that often. I am thinking too much acid from fresh fruit this time of year or maybe pollen allergies. Thank you to all who have answered and gave ideas.

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