Best Sjögrens Syndrome Products — My Daily Survival Kit!

Determining the best Sjögrens Syndrome products to use for dry eye, dry mouth, (and other challenges) is such a personal process. We all have varying degrees of challenges and different products work better for some people than others. But asking each other “What are your favorite products” is still one of the most common conversations I have with other patients. You never know when someone has tried something new that works for them and could also work for you!

This post is about the best products that work for me.  I have focused mainly on some supplements and items for dryness. Addressing pain and fatigue will be a different post.

Take a look and see if some of these ideas might help you. And if you have tried products that you like even more, please do comment and let us all know about them!

Best Sjögrens Syndrome Products  My System

I take prescription medications and occasional NSAIDs to give my system the best fighting chance against inflammation and Sjögrens. The other supplements I take that I believe truly help are:

Omega-3 Fish Oil. I take a lot of fish oil every day; about 5,000 MG. It makes a difference in my inflammation and my eye dryness.  I buy the liquid by Nordic Naturals that has a slight lemon flavor or Wiley’s Finest (also lemon-flavored). I pour this is my morning protein shake with a banana and I don’t even know it’s there! To get that much fish oil in pills would be too many big pills a day for me (on top of all of my other meds).

Turmeric.  There are some great studies on turmeric as an anti-inflammatory so I use it in cooking and will make a paste to put into my morning shake. I tend to eat about 1/2 teaspoon to 1 teaspoon a day.  I love Indian food, so I often put it in vegetables, soups, and chicken dishes.  You will want to read up on tumeric (try Arthritis.org) to see what dosage may work for you or if you need to be concerned with the potential blood-thinning properties of tumeric (at high doses).

Probiotics. I take probiotics for my gut every day. I tend to get multi-strain probiotics at high levels since I do have issues with my gut due to Sjögrens. There is some discussion and research about the relationship of gut health and mood (such as depression), so I like the idea that I could be doing more for myself than just healing my gut.

Magnesium Fizz Powder. I have this “tea” every night before bedtime. The Magnesium relaxes my muscles, helps me sleep,  and aids in constipation or mobility issues the next day. CALM is a popular brand and I use Pure Ionic Fizz. There are different flavors (or no flavor) and I prefer the orange.

Best Sjögrens Syndrome Products My Dry Eyes

Systane Ultra Vials. These are the best eye drops for me. I have tried others but I keep coming back to these.  Eye drops are so expensive, that I tend not to venture from these.

Systane Ointment. The ointment is too thick to use in my eyes and it actually doesn’t feel good. However, I do use it at the corners of my eyes. When I’m having particularly bad eye days, the corners of my eyes get very irritated and the ointment helps (especially in winter).

Warm compresses. These help sooth my eyes at night after a long day of computer work.

Humidifier. I use a humidifier every night and in my office during the day if it’s a particularly dry day. A mini humidifier sits in my car for long drives. This also helps my nose and mouth.

Best Sjögrens Syndrome Products My Dry Mouth

Act Toothpaste and Mouthwash. I know most people use Biotene, but I really like the Act products better. Lately, the toothpaste has been more difficult to find, but I keep trying. Amazon has options, but they can be more pricey .

Spry Mints and Gum.  I LOVE the berry mints! This product is used more than most products for me because I often place one inside my cheek during the day and it melts slowly and evenly. I’m not a big gum-chewer, but the Spry gum is pretty good as well.

Xylimelts by Oracoat. I use the mint-free version at night and love them.  The mint is overwhelming for me. I use two on either side of my mouth (one on top and one on bottom). They can create a bit of a thicker saliva so I don’t use them much during the day (more difficult to speak with than the Spry mint), but because they stick to my teeth, they seem safer than sleeping with Spry mints.

Burts Bees “chapstick” or CARMEX at night. These products keep my lips moist and stay put for a decent amount of time.

Monistat Nystatin cream.  Why, you wonder, do I have this under oral care? I often get angular cheilitis at the corners of my mouth and sleeping with some Monistat cream on them helps heal them. I no longer get thrush much since I suck on Xylitol all day, but some does seem to gather in the corners of my mouth.

MI Paste Plus. I use this paste at night for extra enamel protection and flouride. I slick some over my teeth and it sits there all night. It also has some moisturizing benefit. You can get this from an online store called DentaMart or from your dentist. I like the melon and vanilla flavors because they are very mild.

Best Sjögrens Syndrome Products My Dry Nose

AYR nasal gel. This gel is the safest to use because it does not have petroleum. But sometimes it does not have the longevity I need and sometimes the slight odor bothers me. But it is the safest choice for a nasal lubricant. I’m sure there are others, but I have not used them. The key is to look for products without petroleum (apparently, we might breathe it into our lungs and cause damage).

Bacitracin. When I need extra lubrication or when I have nasal sores that need some additional help, I will use bacitracin. This kills any issues I’m having and lubricates for longer. An ENT suggested this to me as he was more concerned about infection issues than breathing in petroleum product (for me). You will need to discuss with your ENT or make your own choice.

Best Sjögrens Syndrome Products My Dry Vagina

Monistat Nystatin cream. I do use nystatin cream for the yeast infections and sometimes just as a labia moisturizer if I feel like a yeast infection might be coming. I now prefer using the cream over the vaginal suppository because there is more relief with the cream due to dryness.

Coconut Oil- Virgin. I love coconut oil for many things!  Use the whole coconut oil (not fractionated) as it has better moisturizing properties. I cook with it and will use it as a body lotion, but my favorite use is for a vaginal moisturizer or lubricant.  It is a wonderful product to use for comfortable sex.  It is also cost-effective and all natural. I really like Dr Bronner’s but Trader Joe’s has a decent product as well (and comes in single packages good for traveling or keeping bedside).

Best Sjögrens Syndrome Products My Dry Skin

I use Alba moisturizing butter for my skin.  I love the Kukui Nut fragrance, but I know fragrances are an issue for some people. There are many options to help with dry skin and I”m sure you’ve found your favorites!

I hope you have learned about a couple of products or ideas to try for yourself. And as I said at the beginning, if you have products you just LOVE, please share them with us!

I’d also like to take a moment to say Happy World Sjögren’s Day today, July 23rd.  Today is a good day to make a donation to the Sjögrens Foundation. If you’d like to read more about what we accomplished at our last Board of Director’s meeting, read my May post.

16 Replies to “Best Sjögrens Syndrome Products — My Daily Survival Kit!”

  1. I am Claire Wong of Singapore and was diagnosed with Sjogren early last year. I would like to share my experience below:

    1) Dry eye – apply eye gel before bed and Alcon tear drop every morning. Message gently closed upper eye lip in circular manner for 1/2 mins each side with wet cotton pad.

    2) Dry skin – apply Ego’s QV cream all over body immediately after each shower.

    3) Body ache and tiredness – gentle stretching every morning for about 45 mins and morning and evening walk with dog. I attend Qigong classes twice a week. COQ10 enzyme which I recently started on every evening seems to boost my energy level. Also I find some relief in using tennis ball to roll on pain points especially around neck and shoulder.

    4) Dry mouth – oil pulling for 15 mins before brushing teeth about thrice a week to ensure good gum and tooth health. Apply lip balm before sleep.

    5) General – Takes 3000 mg of Omega 3 and 1000 mg Vitamin C everyday. Will commence taking magnesium to help with body ache and chronic constipation which I have for years.

    Lastly, I thank you for sharing so freely on your personal journey, helping me in managing my new life and not feeling so alone.

    Warmest Regards
    Claire

  2. In terms of the ACT mouthwash, it used to be that all ACT varieties were alcohol-free, but now many of their products contain alcohol. Make sure to get the alcohol-free varieties, as ones with alcohol can be drying. Also, they have started playing around with the fluoride concentration in the different varieties, so read the labels carefully and get the one with the highest fluoride concentration. I’m a dentist myself, so I read the labels on all oral products very carefully!

    Another product I have found that helps with dry mouth are the sugar-free cough drops that contain pectin. The pectin acts as an “oral demulcent” and helps me in terms of moisturizing my mouth. I’ve seen these made by both Hall’s and Ludens. Not always easy to find (can get them on Amazon if not locally available). When I do see them in the drug store, I stock up on a lot. Xylitol lozenges are good in terms of anti-cavity properties, but I don’t find that they helps with my oral dryness that much.

    1. Thanks for the tip Nancy! Yes, ACT makes several formulas so be sure to look for the DRY MOUTH formula and read labels. I have not looked for Pectin in oral lozenges and will now look for sugar-free pectin. I do get dryness relief from xylitol, but will see if Pectin is better.

  3. I could not tolerate fish oil, so I take flaxseed oil. Oasis Tears Plus in vials is the best eye drops (artificial Tears) I have found. They contain hyaluronic acid. Genteal Tears Lubricant Eye Gel at bedtime.

  4. I have found autologous eye drops very helpful for dry eye. It is made out my own blood serum so it supplies many nutrients, maybe more from normal tears. Opthalmology figured this out awhile back starting with very serious cornea problems but it has become available now more widely, (your optometrist) (Disclosure: I am a retired on disability from SSJ). Only problem is I pay out of pocket $115 every 6 weeks plus the blood draw $25. If you can afford it and tolerate the frequent blood draw, give it a try!

  5. Hi there so I was diagnoised in 2000. My new thing for dry eyes are sclera lenses. I ended up having to wear glasses but half way threw the day my eyes were red swollen sensitive to light and dry. I work as a nurse and looking like this is terrible everyone thinks I’m tired. So finally I had enough. I was using eye drops every 30 min to try to get threw the day. I found a opthalmologist that fits people with the lenses and they have been a life saver. I don’t worry about putting drops in every minute and no longer squint all day because of the discomfort. You can look them up online and read about them. One pair can last over a year. My mother in law found a cheap insurance plan also to cover the expense.
    Traci C

  6. Janet, this is a very helpful list. I am sure I will be referring to it a lot in the future.
    I heard you speak earlier this year at the national conference and enjoyed hearing about your journey as well as gleaned a lot of advice I am working on putting into use. Thanks for all you and others at the foundation do.

  7. Thank you for sharing your resources. I have come to find products that I cannot live without also. My favorite lip balm now is Hanalei (found on amazon) with kukui nut. It’s vegan and is so much better than the lanolin product I was using previously. I’m also planning on trying this new product I found on another forum, and thought you and your readers would like to try it as well. It helps moisturize your eyes naturally at night and during the day. This is a must-have since I am currently fighting serious dry eyes that are crippling since it keeps me from being able to drive and work. That product can be found here: https://www.eyeeco.com/our-technology.html. I’ll let you know how it works after I give a try this week. Fingers crossed it’s the miracle I need 🙂

    1. No problem. Thank you for this product. The last couple of weeks have been awful with the dry eyes and mouth. Hurts to eat and drink certain things and my special contacts are even hard to keep in being so dry. I appreciate anything others may have for tricks. Toothpaste is hard to use at times so I use a prescription one called Prevident.
      Thank you
      Traci

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