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

Hi, I'm new here and grateful for the opportunity to connect with other's like you that are suffering with Sjogren's. Like you, I too started having symptoms immediately after getting my gallbladder removed. By the second day post surgery I sounded like a box of rice crispies when I got out of bed and walked to the bathroom. I thought it was just dehydration from sleeping so much and therefore not drinking enough water. I was wrong. Fast forward to present, my diagnosis via ANA- Anti Nuclear Antibody blood tests is Sjogren's', Hashimoto's, Rheumatoid Arthritis, & EBV-Epstein Barr Virus. I am told that EBV is the main culprit and causing the other three conditions to present with higher inflammation markers. I've been battling all for a year now with little improvement. I see a Immunologist tomorrow for a second opinion and am hopeful that I can get a good Plan of Care that may help to get the Jeannie back in the bottle, so to speak. * I wonder if there's a connection with getting the gallbladder out ??? I wonder if that is a trigger for activation of Auto Immune Disorders ??? Have you been able the get testing and a Plan of Care that's working for you ?

Sorry.....It would be easier if you specifically describe the symptoms you want o manage if you want other patients' feedback about that. I'm not a doctor so I can't speak to the gallbladder removal as a trigger. I suspect serveral aversive tests I experienced plus the covid booster triggered a flare of Sjogren's for me. So you are thinking like I am. But I am not a doctor and I'm not really sure what caused the Sjogrens or the flare. I was extremely healthy for 69 years before (in retrospect) my Sjogrens symptoms began. i hope you can find a good rheumatologist or immunologist to help you manage the symptoms and get advice from other clients as well. There is a wide range of Sjogrens symptoms so please describe which you are experiencing , (I"m not sure what a box of rice krispies feels like in terms of symptoms-stiff?).

I’ve had my gallbladder removed in 2008 and was diagnosed in 2018 with Sjogren’s only reason I found out then because I asked the dentist about my tongue being white and he said his wife had it. I believe I had it for a few years. Thanks for mentioning the gallbladder it might be the cause or it might not but how would we know if no one asks!

I’m not sure about the connection between gallbladder removal and the development of Sjogrens but I did have my gallbladder removed in 2008. My rheumatologist recently mentioned Sjogrens as a possible 2nd autoimmune disease I may be suffering from in addition to SLE. My new symptoms are neurological and referred to as Small Fiber Neuropathy and/or pure sensory Polyneuropathy after EMG and nerve conduction test. I am unsure of the next step as I have an appointment with a Neurologist next month. Does anyone have neurological symptoms who have been diagnosed with Sjogrens?

@b25alpha Welcome to Mayo Clinic Connect! I’m so glad that you found this site. Hopefully you stay with us and check out some of the other discussions.
This is very interesting! There could be a link between gallbladder disease and autoimmune:
https://pubmed.ncbi.nlm.nih.gov/29422240/
Guess I’m an outlier—I got my AI disease before i had my gallbladder out. Oh, well

Sorry to hear that you found out by what seems to be accidentally that you have Sjogrens. My understanding is that it is a genetically passed condition that runs in some families. If you haven’t already been tested via a blood test, I would start there for confirmation.

Hello,
After many, many years and odd symptoms, I finally got a firm Sjogren's Syndrome diagnosis last year. Since then I've been able to look back and see how I've had Sjogren's for decades. I was also diagnosed with Cogan's Syndrome (which is rare) and now they're not sure on the Cogan's (thankfully, not a good problem to have).
My Sjogren's was diagnosed with a positive ANA blood test (done, oddly and thankfully by an Opthamologist). I have lymphoid hyperplasia in one of my eyes, dry eye, difficulty swallowing, GERD and dry skin, vaginal atrophy, hair loss, dry scalp severe tinnitus, dizziness.
In 2019 I developed cellulitis in my hand and arm and was hospitalized with Sepsis. It seemed so strange at the time. I do have lymphadema in my right arm from my breast cancer surgery...but the sepsis seemed extreme. It was my body overreacting due to the Sjogren's they feel. So........good to know I have Sjogren's and have a firm diagnosis. The Cogan's has been pulled back but was diagnosed with a blood test called a Heat Shock Protein Test. But hopefully Cogan's is off the table. It's a wait and see.
Since diagnosis last year I've had pretty much every body part tested (a Colonoscopy is up next, yippee). I feel my doctors were very thorough. You might consider understanding or asking for these tests and see what your doctors feel. ANA blood test, Dry Eye testing (also my doctors have me on two new dry eye treatments - Klarity Drops and Vevye Drops - stronger than Restassis, which I was on for decades). The new drops have improved my dry eye. In addition to the ANA test, my doctors do regular C Reactive Protein, ESR rates, CBC, White blood cells etc. I also had MRI's of my brain (I have one!), no issues there. The Brain MRI ruled out several other issues.
Throughout the Sjogren's workup I developed severe spinal pain and it was determined I have degenerative spine disease. So far physical therapy is managing that. I've recently developed severe knee osteoarthritis as well. Again, managing with PT for now.
The doctors put me on Prednisone tapers twice. Both times I felt better than I've felt for decades. All symptoms resolved, I actually lost weight (oddly) but my doctors don't want me on steroids long term, but they worked. Then they put me on Methotrexate and after just one month I developed horrible stomach issues. I had to quit using the Methotrexate after five months and am still dealing with the fallout for my intestines.
For now I'm trying very hard to reduce stress, eat better, exercise, follow my pt guidelines and use pain management techniques to hopefully reduce my body's overreaction to everything, especially medications. I can no longer use antibiotics and antivirals. My doctors have added a fibromyalgia type overresponse to my condition. Unfortunately Sjogren's is a patch, patch, patch condition. No real 'cure' but management of symptoms as they develop. I have found it quite frustrating and find the best way for ME to manage is to do my own reserach, keep a journal of my symptoms and hold my doctors feet to the fire. I am lucky to have a primary care doctor who has been incredibly supportive and knowledgeable, getting me to the right specialists and holding my hand throughout.
I was able to avoid the lip biopsy as my Sjogren's was so obvious. I am signed up to start a clinical trial later this year for dry eye that may give insight into treatment and care for that.
I HAVE A QUESTION FOR OTHER SJOGREN'S SUFFERERS - What if anything have you found to help with DRY SCALP???? (I am allergic to coconut and almonds, all tree nuts).....I'm looking for something that might help me sooth the pain, burning and itching on my scalp. I have absolutely no moisture on my scalp and my hair looks like dried straw.
I hope this helps. I'm happy to share additional info on the tests I've had so far and I'm very interested in hearing from others on tips you've found to manage the symptoms of the incredibly severe dryness. HUGS TO ALL

@cindylb Wow sorry to see all this you’ve been thru it’s not easy! I have GERD, Swallow problems because of a bulging disc in my neck luckily it improved in the last year ( I still occasionally get choked, especially here lately on saliva. I can’t wear my Cpap because I wake up choking). Dry eyes(eye doctor prescribed me Miebo drops), sinus problems, feel like bugs crawling always itching some where, bad teeth, lymph node removed in right arm pit, pulmonary artery aneurysm, heart murmur, moderate hearing loss and severe Tinnitus, 2 back surgeries, spinal and cervical stenosis, cyst on my brain, Narcolepsy, Sleep apnea, Fibromyalgia, Sicca syndrome with Keratoconjunctivitis, Several Kidney stone surgeries, Gynomecastia, Gall bladder removed, Hiatal hernia, Burning ear syndrome ( so far 3 of my doctors have never heard of it and said they didn’t even have a code for it) I’ll have to research the Cogans Syndrome. Question for you and others with the dry eyes when sleeping does your eyes water ? As soon as I close my eyes the tears flow non stop. I’m going Tuesday to do my yearly follow up on my failed back surgery, he keeps saying it’s all healed my body says different with all the nerve damage and a severe pain when I stand a few minutes, legs and feet go numb, anal, testicle pain, (But the surgeon says NOTHING is wrong😡 ) Hang in there we will get answers one of these days! I do a lot of research since no one will give me answers and my sister and nieces are nurses and get mad at me for looking everything up lol being off work 16 months has drove me nuts

I have been on pilocarpine for 30 years, for dry eye, and dry mouth (I also have delaying gastric mobility and loss of esophageal motility). I went off earlier this year, to see if a problem would go away. Not only did that not work, but I also developed dry eye, which showed me that the pilocarpine was helping with the Sjogrens.

in reply to @cindylb Wow, your journey has been a long one. I have this syndrome and will soon be seeing an opthamologist again to test for Wilson's Disease. In my case, the labs so far have been negative, but as you know,labs are not always accurate. My dermatologist mentioned something called Nizoral, but I have not tried this for my scalp. My problem does not sound as bad as yours. I am sorry. You can find the product on Amazon, and if you are a Prime Member the cost is about $8 for 2 oz. No nuts. Cortisone, small amount.
You know, autoimmune disorders are so difficult to diagnose and treat. I am not looking forward to my endoscopy, colonoscopy later this summer or early fall. For me, the Raynauds is the worst. I must look like a fool wearing fur gloves during the hot summer in CA.
Best to you my friend