Sjögren’s Syndrome: how do you manage the symptoms?

This is my take on any autoimmune issue:
- When you are having a flare up your lab numbers will be high and reflect that something is wrong and your symptoms will be full blown.
- when your flare up is over, even a week later, your numbers will go down as your symptoms go away.
I know because it happened to me in 2016. Neuro took labs and my lupus numbers were high. Sent me to rheumatologist. Outbreak was over, labs went down, she walked out on me saying "no lupus". Now 7 years later I'll be starting my second round of steroids because of issues possibly lupus related. New rheumatologist who deals with "complicated" cases took labs but I have to wait several more weeks before going over them! He's so in demand. So I will continue to suffer while waiting for an answer. But I like him a lot.

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Sjogren’s Syndrome is generally diagnosed through a lip biopsy. It’s good that you’re going to see a rheumatologist. I have both Sjogren’s Syndrome and fibromyalgia, as well as Exocrine Pancreatic Insufficiency. It’s hard sometimes to tell which disorder is causing which pain!

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P.S. if your eyes are that dry, your ophthalmologist may want to consider plugs in your tear ducts.

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@susanh824 what tests were done to diagnose fibromyalgia?

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I wish you good luck in getting answers. i hope him being in demand means he is very good and you get help. i think thats all any of us want. i have never seen a rheumatologist before. this is all new to me. i understand about flares but i have alot of health issues and alot of specialists appts set up. im going on my 5th GI and im hoping he works out i have a good feeling but we will see next week. my GI issues are actually my bigger concern possibly autoimmune gastritis which i wish wasnt the case but you know i try to reduce my stress as much as possible. stress i know for anything your dealing with will only make symptoms worse. but not having the best drs as i been going through for almost 2 years thats stressful. but i just found a really good primary, which does lift alot of stress up, so thats a good thing. the GI is right there where they are so im hopeful.

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they are well recently he said i had no "dry" spots just thinning he prescribed restrasis. he looked up my insurance as far as coverage it was a tier 3 another drop was tier 4 i didnt expect it to be as expensive as it was so i wasnt able at this time to get it. so im using systain 3x a day.

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I just found a good primary as well!! This rheumatologist takes difficult cases. My old rheumatologist scrolled through my medical issues, said she had never seen someone with so many issues and proceeded to walk out on me and they wouldn't provide another doc in the same group. I also have a lot of medical issues. Breast cancer survivor. Thyroid cancer survivor. Chronic leukemia for life. Burst bowel and lost my sigmoid colon -colostomy, resection and hernia surgery. Stroke. Etc etc etc life goes on right? Some people give up. Some peoples bodies don't let them give up. I'm in the latter group although my 4 yr old grandson has helped, and my mother just passed in September and I don't get along with my sisters! I had to drop all communication with one because she was so verbally abusing me it almost brought on another stroke! ❤️❤️😊

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i have heard about the lip biopsy. my bloodwork i had relating for sjorgens was last summer so who knows now. also at that time i didnt have dry eyes which i do now. rather badly. my apt is tuesday. unfortuentley we are expecting alot of snow so since he is aways away from me i might have to reschedule. i dont want to at all but may not have a choice. i been trying to see a rheum since last summer. but i know from their message for my appt if i had to reschedule it may take a month for a new appt. not really what i wanted, i been waiting so long. my pain body pain is so incredibly painfu upper back, shoulders neck arms i thought maybe was fibro but someone sent me a article how sjorgens pain mimics fibro but i dont know i have to lay down most of the time pain is that severe. dont really know what it is. i was hoping to ask for a mri. i been trying for one since last sept. noone would help me but i been working had on finding better doctors so im hopeful. also pain in the ribs. no idea if thats from possible fibro or connected to my autoimmune gastritis. id rather it be fibro pain. thanks for writing!

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Hi,
oh wow. well im glad you as well found a good primary. but your rheum walking out on you.. that is awful. i can really identify with you though. everything went down for me though after my second vax. gi issues started shortly after that. galbladder out in janury 2022. endoscope last june saying linear endrocine cell hyperplasia with possibilty of autoimmune gastritis. then gi ghosted me took eigh months to get antibody bloodword unfortuentley supporting autoimmune gastritis going on 5th gi hoping to have endoscope repeated. Also dealing with possible sjorgens, joint pain, silent reflux, hashimotos. wow my sister, same she cut me out 2 1/2 yrs ago but she is a very snobby, judgemental person. my brother, mom and dad all have passed. i only have my husband and my adult autistic son. alot of stress so im trying to stay as stress free as possible!!!!

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I suffered further heart issues after first vax and my previously very healthy daughter has been sick with autoimmune issues since her one and only booster. I think the vaccine and boosters (which I refuse to take) have messed with our immune systems. Some of us. Those whose bodies were just waiting for that "turn on " switch. Sad. What you have sounds very similar to what my daughter is going through and we have an absence of doctors who know what they're talking about nonetheless know anything about immune diseases. It's disgusting. I wish you well and hope you get some good news 😁

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