Perhaps this info site from the Mayo Clinic might be helpful, Phoggie.

https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/diagnosis-treatment/drc-20353221

I don't have the seriousness of the problems but with eye issues and dry skin problems, I can empathize.

https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/diagnosis-treatment/drc-20353221

I know someone who has it, but not close enough to have ever gotten into details about her treatment. It is an autoimmune disease so anything that helps with inflammation and immune disorders would probably be helpful such as anti-inflammatory diets. Also, autoimmune disorders often come in multiples, so be sure to get tested for other autoimmune diseases as well. (I have 2 that I know of.)

Would see a rheumatologist if you have not already done so. Many treatments are available.

I know a little bit and have had very dry eyes. There are things that can be very helpful. A ot of practitioners tend to be uninformed. As mdln suggested, a rheumatologist can be helpful. There seems to varying degrees of severity within individuals. and even within any individual, it can change. Please IM me if you want moe info and details.

Are you having issues with your eyes or mouth feeling dry? I can recommend some OTC preservative-free eyedrops. There are also measure you can take if you are dealing with dry mouth. IM me if you care to.

There are gentle mouth washes and toothpastes. Be sure that you practice meticulous dental hygeine. Floss regularly and brush, of course. I favor the Braun Oral B automatic toothbrush. IMO, better than Sonicare. I compared both. The Oral B that I have was under $99 and gives an even gentle brushing. Two speeds. It flashes a red light if you are pressing too hard on your teeth. I don’t tend to do this, but some people do.

Because dry mouth is frequently a component of SS, Sjogren’s Syndrome, it is imperative that you keep your teeth flossed and clean. Both DH and I use a prescription toothpaste that give a good fluoride remineralization. We use Prevident 5000 ppm Rx only. I like the Dry Mouth formulation (it has less of that foaming **laurel *** in it, so it feels less harsh.

If your eyes feel dry *and believe it or not, they can be watery as a response to the dryness), look for an eyedrop that is ”Preservative free.” And use them regularly, even when yolu don’t think your eyes are dry. There are several good brands. They come in a ”single use” plastic ampule with a snap off top. Do NOT touch this to your eye, just tilt your head up and put a drop in. Rely on proprioception. I can do this while running or in a dark room. It’s easy. I use mine several times, replace the cap. Not supposed to, I guess, but I have done this for years.

If you find yourself in pain, or discouraged, please don’t be. This condition can be managed. Some older medical books may have some scarey info, but it’s likely outdated.

A lot of seniors and others have dry eyes. Some nursing facilities would do well to treat their reisents to a few preservative-free eye drops, IMO.

SS can be associated with other conditions such as arthritis. Get informed on non-Quack, real scienced based sites and find a Rheumatologist who you feel comfortable with. Ditto for a good Ophthalmologist or optometrist. There are a few things that can make dry eye, dry mouth or Sjogren’s Syndrome much easier to manage.

Keep the faith and if you are experiencing this condition, please don’t feel down. Reach out, connect.

Sorry this is so lengthy, but I have great empathy. My eyes were once so dry, it was painful to blink. I wore fogged up swim goggles for relief. To avoid scraping my eye in the morning, on waking, I had to remember to reach for the PF (preservative free) eye drops before opening my eyes. Otherwise, if I openen my eyes that were dry shut, I would scrape the eyeball and that super sensitive epithelial tissue. OUCH! I am much better now.

PS One more thing — there are blood tests that can detect certain antibodies, but one can have Sjogren’s Syndrome or very dry eyes without these antibody tests being ”positive.” Similarly, a biopsy for something like ”temperal arteritis” can be neg, but you still might have that condition, as a friend did. Fortunately, her doctor treated her with a course of steroids without waiting for the biopsy results.

Please excuse my typos. HOUZZ makes it VERY difficult to select and edit typos. The screen begins flipping around.

Annie, thank you for the links...no one has suggested an anti-inflammatory diet. I do have Hashimoto’s also. I wish I had seen this before getting my weekly groceries, but I did stock up on fresh veggies and fruits.

Winter...We did try some suggested things from Mayo Clinic, including Hydroxychlorquin and Salagan....but sadly, none have helped.

MDLN..I have not seen a Rheumatologist...I will look into finding one...thanks!

Thank you, petalique...I do have some problems with dry eyes, but it is this gosh awful dry mouth that is driving me nuts! I have tried every toothpaste, gel, mouth wash, etc on the market that the drug store carries! My lips feel like they are on fire and hurt. I have thick saliva that tastes and smells terrible...embarrassing! My dentist asked questions about it at a conference for dental professionals but couldn't find any solutions.

Yes, I have Sjogren's. I have both Scleroderma and Sjogren's. When you have one autoimmune disease you usually get more than one. I'm not on any special medication. I did have a salivary stone last year and spend three days in the hospital with infection. I lost four teeth before I was diagnosed and have several crowns. I've spend a small fortune on my mouth. I have to be careful with my diet and try to limit gluten, dairy and sugar.

Biotene makes some dry mouth products.

Yiu might want to avoid alcohol, salty items, bright sun and licking your lips. Some lip balms may be helpful. did you doc diagnose you or do tests? There is an ”artificial saliva” spray named Salogen (IIRC). Did your doctor or dentist palpate your salivary or parotid glands, or do these seem swollen or tender? See if you can get an appointment with a rheumatologist. There may be a Sjogren’s Syndrome support group in your area. There is a Sjogren’s Syndrome organization nationally and they would have lists of support groups, and maybe some regional contact people. Maybe some doctors on their board of advisors. I don’t know where you live.

There may be REDDIT subgroup.

PS I’m sorry that you’re going through this and hope you find a good doctor and some cofort soon.

PS I think there are a couple of online support groups, forums or mailing lists.

Jkayd...With this nasty tasting mouth, I am constantly wanting something sweet in my mouth so probably overdoing the sugars! I know my teeth are going to suffer from this stuff! 😢

Hey, look what I found for you, Phoggie. I think you can peruse the posting without joining, but I believe joining s free if you want to post and sk for help or ideas.

https://www.reddit.com/r/Sjogrens/

PS Please keep in mind, that sometimes people post when they are not feeling well. Of course, others post to help. But forums like this might tend to be skewed toward the rtough news or complaint end; just so you remember that Sjogren’s and a lot of syndrome like that can wax and wane in difficulty. I’ve had times with dry mouth and it camn be so frustrating because all the fresh water in the world doesn’t necessarily offer relief. Saliva is composed of more than water.

There is relief and comfort out there.

PS Definitely avoid or limit sugars. None of those gummy stick to your teeth things either. It may also be prudent to limit acidic foods or beverages such as lemons, and drinks that contain acidic flavor enhancing substances. Also things that might increase your dry mouth such as alcohol, tea, tannin containing items and some coffee. Be sure to rinse well, floss brush after eating. Avoiding tooth decay is a huge challenge for those with dry mouths. $$$

Thank you so much for this link! i have used my essential tremor and spinal surgery forums a lot...some good (and discouraging) info on support sites!

Yes, support sites can be a mixed bag. And you might want to tread gingerly. I have encounted a few ”sick” sick sites — pettiness, bullying, territorial, and once an medical practitioner ”expert” who was easily threatened by a newcomer, especially if the person felt out-ranked. The person had a cadre of supportive followers. Personally, I mostly observed, but guessed that the expert had some sort of personality psyche issue. I saw people get treated a bit rouyghly (people who were sick, for heaven’s sake). Some left.

As with today’s whacky lopsided politics, I guess there are all types.

Phoggie, did you read recently about a possible treatmwnt of essential tremor? I will try to find the link for you if you have not already read it. Spinal surgery. Yikes. I have had monster monster back pain for year. torture.

Petal...yes...in fact, I have been approved to have FUS but when Covid took over the world, it was put on hold...but during that time, I did more investigating and after finding out that if there was a "slip", the the brain damage is permanent...so have not done anymore about it. Although it is maddening, it is not fatal and my family and friends accept me just the way I am.

Bless your heart if you are having half as much pain in your back as I am! I have had two major back surgeries, and at 80, it would be a crap shoot if it would help at all and might be even worse! I have done all of the things required ... PT, Injections, MRIs, etc...so surgery is the only thing left...or try to put up with it.

With all my health issues, I just wish the old ticker would stop in my sleep! With 22 surgeries, have just had ”enough”!

Phoggie, for salivary stones they tell you to suck on hard candies or lemon drops. I use lemon drops but break them up because I'm always afraid I'll swallow them.

Interventions for dry mouth and hyposalivation in Sjögren's syndrome: A systematic review and meta-analysis

Arwa Al Hamad et al. Oral Dis. 2019 May.
Abstract Objectives: Systematic review with meta-analysis of interventions for dry mouth symptoms and hyposalivation of Sjögren's syndrome (SS).
Materials and methods: We searched MEDLINE, Cochrane Central and EMBASE up to February 2018 for randomized trials of interventions for dry mouth and hyposalivation of SS. The primary outcome was the mean change in xerostomia symptoms. The secondary outcomes included changes in salivary flow and quality of life. We used the Cochrane risk of bias tool for individual studies and the GRADE method to summarize the quality of evidence across studies for the included outcomes.
Results: Thirty-six studies (3,274 patients) were included in the systematic review. Results from the meta-analyses showed high-quality evidence that pilocarpine was superior to placebo in reducing dry mouth symptoms. We found moderate quality of evidence that pilocarpine, rituximab and interferon-alpha were more effective than placebo in increasing salivary flow, with the relevant effect size being large for pilocarpine, and notably smaller for rituximab and interferon-alpha.
Conclusion: Clinicians should be very confident in the beneficial effects of pilocarpine upon dry mouth symptoms of SS and moderately confident that pilocarpine, rituximab and interferon-alpha can have beneficial effects upon salivary flow.

Meta-analysis on pharmacological therapies in the management of xerostomia in patients with Sjogren's syndrome
Komali Garlapati et al. Immunopharmacol Immunotoxicol. 2019 Apr.
Abstract Introduction: Sjogren's syndrome is an immunologic disorder, characterized by symptoms of dry mouth and dry eyes. Management of xerostomia is more difficult and challenging, various pharmacologic agents have been tried and evaluated in the management of xerostomia in these patients, but the results were inconsistent and variable. Hence, the present study is aimed at evaluation and comparison of different pharmacological agents in the management of xerostomia in patients with Sjogren's syndrome.
Materials and methods: A meta-analysis of case-control studies was conducted on pharmacological management of xerostomia in patients with Sjogren's Syndrome and the collected data are subjected to exclusion and inclusion criteria and standard mean difference (SMD), ODD's ratio and confidence intervals (95% CI) were calculated by Review Manager software using fixed and random effects model from the data of five studies.
Results: Both objective response and subjective response evaluation favored experimental group suggesting an increase in unstimulated salivary flow rate using pharmacological agents. Interferon alpha 150 IU three times daily had a good effect in increasing the unstimulated whole saliva flow rate with SMD 2.72 at 95% CI [2.43, 3.00] p < .00001. Cevimeline vs placebo showed good response with ODDS ratio 2.74 at 95% CI [1.58, 4.76] p = .0003. Conclusion: Interferon - α 150 IU thrice daily was proven to be effective in increasing salivary flow rate and also has an advantage of disease modification in SS patients attributing to its immunomodulatory action. Cevimeline 30 mg thrice daily also had a considerable therapeutic effect in SS patients compared to Pilocarpine.

The last time I was at the medical office my NP told me I had Sjogren's or xerostomia. Well, I just don't think so. I just copied what the website said about and it's not me. She prescribed Nystatin it's an antifungal of the mouth. I did that for 10 days and it did nothing. I have been fighting with something since Feb 12 2022 no one seems to know what it is. I have another Dr. appointment the 8th.

I have it. I had to quit wearing contact lenses because of it. I have several auto immune conditions. Seems like once you are diagnosed with one soon others follow. I have been going to a great rheumatologist. I take some medication for various ones. I basically just deal with it. Not a whole lot helps. I carry a stainless steel water bottle with me at all times. I am never without water. I have tried the over the counter products but didn't find much help from them. Good luck! Definitely a good rheumatologist and lots of testing is important.

Certain medications make it much worse. I have to take Amitripitiline at night for severe neuropathy in my legs and feet due to a different disease I have. Well Amitripitiline is notorious for causing dry mouth especially when sleeping. And it definitely affects me that way. So if you are on any medications make sure to investigate them and over the counter supplements. I do take plaquinil daily and low dose prednisone.

I also have sjogren’s along with Lupus. i can deal with it but like raven i always have water with me to sip on . plaquinil has been in my routine for over 30 years maybe that has helped as it doesnt seem to have gotten worst over the years . A rheumatologist is the one to see. sorry to hear you are dealing with such terrible symptoms

what is everyone's symptoms with sjogren’s?

I just back from the Dr. My diagnosis was Burning Mouth Syndrome. I hope the meds work.

Joann...what med did you get? I have not heard of Burning Mouth Syndrome.

Joann, I’ve heard of that. sorry you’re dealing with it. Is it likely to go away after a while (months)? I hope so. Does anything help? Ice?

Gabapentin, sucralfate, Lidocaine & Methylpred I am feeling drunk today. Burning mouth Syndrome

they have many side effects

Joann...sometimes the side effects are worse than the diseases.

💊💉

And many "side effects"

are NOCEBO effects.

What is NOVEBO?

Wiki explains it in the article attached. Interesting.

https://en.m.wikipedia.org/wiki/Nocebo