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.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

@graveltruck

I lost my hearing overnight. The specialists called it something like Sudden Sensorial Hearing Loss. All 3 said they see 2-3 patients a year with it. Some regain part or all of their hearing. Not me. Stone deaf. However, I thank God it is silent. No roar or any noise.

I have taken thyroid medication for 30 years and prilosec for probably 10.

The Mayo Clinic diagnosed me thru blood tests.

I went to a rheumotologist but he said Sjogren’s was nothing to be concerned about…….. My primary doctor takes better care of me.

My doctors do not offer me any helpful solutions other than what we all read about stuff for the dry eyes and mouth. I have found that taking 3 Flax Seed Caps a day keeps my eyes moist. The only thing that is helping my throat are Halls Honey Cough Drops. I keep Avon Care Deeply lip stuff on my lips which does help until it wears off.

I am not willing to take any of the drugs. I personally think the side effects are too dangerous. Just my opinon for me. I do not fault anyone for whatever works for them.

Fortunately, I have primary Sjogren’s. I see where there are 3 stages of it and later I may develop Lupus in addition to it attacking my pancreas, liver and kidneys.

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Can you please tell me what brand of Flax see caps? Thank you

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I had it for quite a while due to the poisonous effects of ruptured silicone implants after a bilateral mastectomy. I’m not sure how it gradually receded, but I am no longer am plagued by it.

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Hello I have had Sjogrens Syndrome seems like forever before I got diagnosed now years later I’m now with MCTD and found out today my kidneys are stage 3 b ! I was at a stage 3 a before a nurse told me cause I told her I was taking Advil for pain. Several years ago I ended up in icu with sepsis.. yeah they told my husband to call my children to say goodbye before they could I ended up on ventilator for couple weeks with multi organ failure. Now after Heart attack , Stent , small bowel blockage and surgery for that .I’m so frustrated with Drs seems they don’t care at all. Today the Rhuemotology doc wants to start me on Humira injections my gut tells me a big No. I’ve taken Nexium twice day for years for esophagus to find out it can cause kidney failure grrrrr. I just want to know has anyone had similar issues? Thx Nice to Meet Y’all .

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I have had this for over 40 years now. Be glad to talk with you about it. Thanks

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I was diagnosed in 1990s by lip biopsy and blood work. My main complaint was dry eye. I had punctal occulusion in late 90s. My mouth is not wholly dry. I’ve been in “remission” (my term) for years. Only using eye drops as needed and increasing moisture in my environment when needed.
I’m now dealing with a skin condition that we are trying to definitively diagnose. Is it lichen schlerosus or morphea? I think my dermatologist is going to consult with my rheumatologist and, hopefully, my gynecologist. Related? We will see

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@gingerbear22

I was diagnosed in 1990s by lip biopsy and blood work. My main complaint was dry eye. I had punctal occulusion in late 90s. My mouth is not wholly dry. I’ve been in “remission” (my term) for years. Only using eye drops as needed and increasing moisture in my environment when needed.
I’m now dealing with a skin condition that we are trying to definitively diagnose. Is it lichen schlerosus or morphea? I think my dermatologist is going to consult with my rheumatologist and, hopefully, my gynecologist. Related? We will see

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Welcome to connect, I have gotten mouth linchen in my mouth, I usually deal with it thou along with activation of burning mouth syndrome? Which it seems to be triggered by a IV contact dermatitis hypersensitivity response to something I'm allergic to. You might want to consider having allergy testing done. I'm going to be getting referred to Mayo, for Sjogren's, But; my Antibodies test always comes back negative, But definitely have all the other symptoms for years, Did you ever have that problem before getting a positive blood test?

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I’m not familiar with that term for mouth I will look it up. After my last hospitalization I was so sick out of my head for days and my dentures sat in a dry cup!! Now I battle with thrush every other month Dr thinks it’s my dentures causing it but they cost too much to replace . I also battle dry eyes , dry mouth dry everything 😢Now rf blood test very high with high sed rate . So discouraging. Hope you feel better soon.

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@gingerbear22

I was diagnosed in 1990s by lip biopsy and blood work. My main complaint was dry eye. I had punctal occulusion in late 90s. My mouth is not wholly dry. I’ve been in “remission” (my term) for years. Only using eye drops as needed and increasing moisture in my environment when needed.
I’m now dealing with a skin condition that we are trying to definitively diagnose. Is it lichen schlerosus or morphea? I think my dermatologist is going to consult with my rheumatologist and, hopefully, my gynecologist. Related? We will see

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@gingerbear22 how very lucky for you that the doctors are going to talk with each other! Are they local doctors or university related? I found this information on Morphea scleroderma:
https://www.mayoclinic.org/diseases-conditions/morphea/symptoms-causes/syc-20375283
Do you have other symptoms of Sjögren’s syndrome besides the dry eyes?

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@littlechimama

Hello I have had Sjogrens Syndrome seems like forever before I got diagnosed now years later I’m now with MCTD and found out today my kidneys are stage 3 b ! I was at a stage 3 a before a nurse told me cause I told her I was taking Advil for pain. Several years ago I ended up in icu with sepsis.. yeah they told my husband to call my children to say goodbye before they could I ended up on ventilator for couple weeks with multi organ failure. Now after Heart attack , Stent , small bowel blockage and surgery for that .I’m so frustrated with Drs seems they don’t care at all. Today the Rhuemotology doc wants to start me on Humira injections my gut tells me a big No. I’ve taken Nexium twice day for years for esophagus to find out it can cause kidney failure grrrrr. I just want to know has anyone had similar issues? Thx Nice to Meet Y’all .

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@littlechimama, you certainly have a lot going on. You might also be interested in these related discussions:
– Undifferentiated Connective Tissue Disease https://connect.mayoclinic.org/discussion/uctd/
– MCTD (Mixed Connective Tissue Disease) https://connect.mayoclinic.org/discussion/mctd-mixed-connective-tissue-disease/
Members here are talking about MCTD and Sjogren's, like @bunnysammy @marye2 @renm @carol01 and @tigerlilly

There are many helpful discussions and members in the Kidney & Bladder group including people with Stage 3b kidney disease. See here https://connect.mayoclinic.org/group/kidney-conditions/

Have you been able to do a complete medications review with your rheumatologist to decide what is best considering your multiple conditions? What symptoms are the most challenging and what ones are you managing well?

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@colleenyoung

@littlechimama, you certainly have a lot going on. You might also be interested in these related discussions:
– Undifferentiated Connective Tissue Disease https://connect.mayoclinic.org/discussion/uctd/
– MCTD (Mixed Connective Tissue Disease) https://connect.mayoclinic.org/discussion/mctd-mixed-connective-tissue-disease/
Members here are talking about MCTD and Sjogren's, like @bunnysammy @marye2 @renm @carol01 and @tigerlilly

There are many helpful discussions and members in the Kidney & Bladder group including people with Stage 3b kidney disease. See here https://connect.mayoclinic.org/group/kidney-conditions/

Have you been able to do a complete medications review with your rheumatologist to decide what is best considering your multiple conditions? What symptoms are the most challenging and what ones are you managing well?

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No I sure haven’t I feel like I’m going crazy same time I deal with this I deal with my daughter having same problems I started with and a father whose Alzheimer’s is just plain more than heartbreaking it’s unsettling.

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Some good articles-

Fourth Annual Supplement on Sjögren’s syndrome of the "Clinical and Experimental Rheumatology" journal –
https://www.clinexprheumatol.org/a.asp?IDArchivio=255

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I was diagnosed in 2006 with Sjogrens Syndrome, about 4 years after Lupus (SLE) & Fibromyalgia diagnosis. I also suffer from Hypothyroidism,( Hashimotos), Myofacial pain syndrome, Kidney disease stage 2 now, used to be stage 3, bursa pain on both thighs, spinal arthritis, degenerative disc disease, etc… I had a TIA when I was only 36 I am currently 58. Trying to narrow down what disease is causing pain is not exactly easy. I take 16-18 meds per day, my son calls it my trail mix. Bipolar runs in my family back 5 generations now, not fun at all with all the physical issues as well. I've been on Plaquenil 400mg per day since 2002. This drug is used for many of the autoimmune disorders I have. I have also become a Covid longhauler as of August 2021. My new symptoms match those of Chronic Fatigue Syndrome, or possibly Polymiagia Arthritis. Time will tell, on list for Post Covid group with the U of M hospital. Earliest they can get me in is March 9th 2022. I'm already taking Oxycodone and Tizanadrine for previous back issues, but are not always strong enough on my bad pain days since I had Covid. You'll probably see my name on many other forums on this website, it has been a long time since I was able to find people who face some of the same challenges on one website. Oh lastly I have found the name for an issue I have had a terrible experience with. It's called Auditory Hallucinations, it's hearing like a radio station playing music when there's actually none being played. The songs I'm not familiar with and they are not completely in tune. I read it is found in people who have hearing loss, which I don't. My hearing is top notch. People have also said they enjoyed hearing the songs, I have the exact opposite reaction. I just want them to stop when they start.I have heard words used over time and time again when being tested or results of tests, such as "that's odd", " I've never seen that before", " sorry, that's never happened before". I even received a phone call from my doctor beginning the conversation with "you're one odd duck"
So there is not much that overally makes me feel uncomfortable anymore. I just take it with a big breath and don't get over stressed about things medically I don't have any control over.
Way to go Mayo Clinic!!

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