So I’ve been using Hylo-Forte eye drops; not perfect but better than all others I’ve tried. It is different from what we can buy here in the US. - the active ingredient is Sodium Hyaluronate. I showed the bottle to my ophthalmologist - he knows of this and was surprised I had them and was fine with it. For what ever reason it is not approved for OTC here. But…. You can find it on Amazon by way of Germany to UK to US. Be careful - there are several sellers and I saw some comments about the box having been opened, etc. I’ve ordered 5 times now from this seller below and never had an issue.
Hylo Forte Eye Drops 10 ml https://www.amazon.com/dp/B00KGZS3K8/ref=cm_sw_r_cp_api_glt_fabc_40XXYDA0Z4ADNKTTPCNC?_encoding=UTF8&psc=1
These are the best eye drops I’ve ever tried, and I think I tried all the drugstore brands over the years. Hylo-Forte eye drops They are made in Germany and have a special dispenser that does not allow any air to enter the dropper so they stay fresh with no preservatives. They are expensive but they work so well that I need less of them so the overall cost is less.
I also started adding electrolytes to my water (I only ever drink water or green tea) in the past year and it’s a complete game changer. I feel so much more hydrated than before. I use this one but there are lots of brands out there: Trace Minerals electrolyte concentrate. You really only need a small amount, so one bottle lasts a month.
I am on Cevimeline, but it is prescription only. I couldn’t function without it. Some people report side effects, but I didn’t have any when I started and have been on it for a few years now.
I sleep with an eye mask to help block the light but it helps with dryness as well. I had to train myself to sleep in a way that my mouth wouldn’t drop open in my sleep in order to keep my mouth and throat from drying out in my sleep. I only sleep on my side or stomach with my head turned to the side. If I sleep on my back my mouth opens and I wake up with the worst cotton mouth that takes half a day to clear up. Some people recommend taping the lips with med tape to keep mouth closed while sleeping, but that was very uncomfortable for me.
As another commenter mentioned, a multi-step moisturizing process is a must for the excessive skin dryness. I try to stick to natural products because my skin is ultra sensitive. I use Everyone brand body lotion (inexpensive for a huge bottle and fairly natural) immediately after the shower, then I will use sweet almond oil on top or shea butter to help seal it in.
One of the biggest things that helped me was switching up my diet. I follow the Autoimmune Protocol, please feel free to join us over on r/AutoimmuneProtocol for more info on that. Here is a website from the doctor that came up with the protocol: What is AIP? (Dr Sarah Ballantyne). I will say if you do anything, the best place to start is ensure you’re getting plenty of good fats in your diet. Olive oil, avocados, fish, avocado oil, etc. This will help keep your body hydrated.
I added supplements that were recommended by others with Sjögren’s when I was first diagnosed, but honestly I’m not sure if they help. I should probably do a trial to go off of them and see if I notice a difference. Anyway, the ones recommended to me are hyaluronic acid supplement (usually combined into a collagen, glucosamine and chondroitin capsule), and seabuckthorn oil capsule. Fish oil supplements are also recommended.
Reducing stress to the best of my ability has been one of the most helpful changes I have done. It takes a lot of work to make your life easier, but it’s well worth it. I even changed careers to help reduce stress even further. My job in corporate America was extremely taxing and I didn’t feel fulfilled. Things are much better now.
There’s no cure for Sjögren’s, but finding your combo of helpers will go a very long way. Adequate sleep, time outdoors, and enjoying the company of loved ones make a huge difference. I’m sorry you have to be here, but this is a very supportive bunch. Sending hugs! <3