Best products from r/Sjogrens

Thank you!
That tea sounds interesting, I'll look into it. I drink a ton but that doesn't help at all... I've been chewing tons of gums but didn't think of xylitol ones.

Omega 3s are important in autoimmune disease, as is reducing the amount of omega 6s (vegetable oils, basically) as they have the opposite effect to omega 3s - they promote inflammation. I've dropped vegetable oils pretty much, and have started to take 1000 mg of omega 3 daily (maybe it's 1500 actually), as I ate zero omega 3s for years and tons of omega 6s.

https://www.ncbi.nlm.nih.gov/pubmed/12442909

I might also start taking white peony as I've read it helps people with autoimmune disease, and read a post from someone with Sjogren's who had big improvement on it
https://www.amazon.com/Life-Extension-Immune-Vegetarian-Capsules/dp/B00GDLWZH6/ref=cm_cr_arp_d_product_top?ie=UTF8

It's an immunomudolator, there are other herbs that work this way apparently, I haven't researched it yet.

As for dry mucous membranes in general, sea buckthorn is apparently helpful - I just found a study yesterday where they tested its efectiveness in women with vaginal drynes who had sjogren's and it worked. The full stody is behind a paywall but they mention its results in another one that tried to see if it'd work for another group fo women

https://www.sciencedirect.com/science/article/pii/S0378512214002394#bib0055

>Sea buckthorn (Hippophaë rhamnoides) oil has in the Central Asia traditionally been used for the treatment of inflammations in the genital organs and uterus [6]. Intake of sea buckthorn (SB) oil produced with a supercritical carbon dioxide extraction process has in clinical studies shown beneficial effects on serum lipids and lipoproteins [7], dry eye [8], markers of endothelial inflammation [9], and platelet aggregation [10]. In a double-blind, randomized, cross-over study in women suffering from Sjögren's syndrome, SB oil relieved the dryness-associated symptoms of genital mucous membranes [11].

from what I've read, you should take oil from the fruit as opposed to seeds for dry mucosa, although it seems like in this study (and therefore I'm assuming the Sjogren's one too) they used a combination of the two. I've scrolled through reviews of various sea buckthorn products on amazon and it seems like people use it for Sjogren's with success.

Have you considered any dietary changes to see if that may help? I say this with full understanding of how hard it can be, I have been cutting things out/experimenting with what works best for my various autoimmune conditions for the last 5 years.

I have been on an elimination diet called the Autoimmune Protocol for over a year now. I think cutting out all grains and soy is the best thing I’ve ever done for my health.

I also take a medication called cevemeline to increase tear and saliva production and it helps tremendously! I added a sea buckthorn oil supplement and it does seem to help, along with lots of preservative-free eye drops. My doctor recommends those because they have the added flax seed oil to help lubricate the eyes naturally.

I hope you find something that works for you, this disease is the worst! Sending big hugs <3

I just started taking it for vaginal dryness...we’ll see if it helps! I sure hope so. Mouth and eye dryness have been easier for me to treat than that. I’ve basically stopped having sex, because it’s a huge chore and requires a TON of lubrication and is still painful with that. Sorry, TMI haha. If the sea buckthorn helps even a little, that’ll be great.

Eta: This is the one I’m taking. I hope it’s the right kind!

Sea Buckthorn Oil Blend, Omega-7 100% Organic Vegan Capsule, 120 Softgels https://www.amazon.com/dp/B07RYNY2CM/ref=cm_sw_r_cp_api_i_-dWyDb0SGC10C

Yes, this is what I take: Solaray Sea Buckthorn

I take two in the morning and two at night.

I also want to add - good fats in general also help, so like I take fish oil supplements, use coconut and olive oils, eat avocados. I found that finding dietary triggers helped with my symptoms over all. Paleo or AIP (auto immune protocol) are diets that people find helpful.

I struggled with eye pain at first but getting everything under control really helped. There's a great thread here: https://www.reddit.com/r/Sjogrens/comments/cdlvps/sjogrens_survival_supplies/

There's one at my work. I've had back surgery so i'm not sure if I'm supposed to use it or not, but I did stand on it and do squats one day. Kinda interesting. the science looks good.

Amazon has the same brand we have at work for about $140. I'd just spend a little time looking at reviews on amazon, really.

Hey, in case you're interested, I can give a personal review now...

https://www.amazon.com/Vulva-Balm-Cream-Moisturizer-Treatment/dp/B01BVZAQLK

I just got this a few days ago and it's amazing. No lubricant has helped me this much. It contains Sea Buckthorn oil too, among other things. You can't use it with condoms though, just a heads up. Oil can damage latex. For everyday use it's really great though.

https://www.amazon.com/Advanced-Orthomolecular-Research-Energizing-Gluten-Free/dp/B01BWAJW8M

Good luck 😉

Xylitol is a sugar alcohol that is recommended by dentists as its not damaging to your teeth. It also happens to promote salivary gland production. One thing to note is that it is absolutely TOXIC to pets, so keep it out of their reach at all times.

These are the ones I use. I keep them in my purse in a little pill pocket thingy.

you could try honeyed ginger crystals! they are also basically black magic for nausea. i get them at a local asian market. you just mix it in hot water for tea or cold water for a nice refreshing drink. here is a link; http://www.amazon.com/Instant-Ginger-Honey-Crystals-Pack/dp/B002SWB73C

I have an ointment that I use at night which is hella soothing. Unlike the ones sold here, it doesn't have petroleum in it. I order mine from the UK, and it takes about 2 weeks to get to me.

Hycosan Night https://www.amazon.com/dp/B078J1T49Y/ref=cm_sw_r_cp_tai_3PA2Db05FEABD

It lasts a really long time, and most days (when I remember to use it) I find I don't need drops until mid day.

Edited to add: I also started taking double doses of fish oil, which started helping after about a week. And my joint pain lessened some. It's not gone, and I need to take NSAIDs most days. But now it's like once or twice a day instead of all day long.

Let's see here it is on Amazon for 1.99. Here is the recap.

Step 1. Do not use chapstick. I find it only helps for a short period of time. I stead use Vaseline lip therapy. It's sticky and gooey but it's the only one that works long term and it doesn't create an addiction (yes, chapstick does that) https://www.amazon.com/dp/B00H8BNEFW/ref=cm_sw_r_cp_apa_rHeYzbB43X219

I have not tried anything like this. But there are 35 reviews for this product on Amazon Quartz Silicone Shield for Nighttime Shelter https://www.amazon.com/dp/B01IIFF29M/ref=cm_sw_r_cp_api_vcaAybW3D9CSD

They seem to work in general as long as the pair fits you properly.

This is the mint flavor link

https://www.amazon.com/Axon-Optics-COVER-RX-Migraine-Sensitivity/dp/B01JQYGNGA/

I will not go into most stores without. Makes a massive difference.

Gotten to the point were spouse will bring them if I forget.


Fl-41 is the lens type.

Sorry for the late reply. Managed to write a long one and got it dissapear by clicking from a wrong button. Fun times.

I don't think there is a miracle pill or a doctor that will guide to you to the right direction. You have to change your life by yourself and try out different things that work for different people. Keto and lifestyle change might be a big thing, ordering few of those herbs that I suggested might be even bigger. All of these different things might not work but you won't be able to find it out if you don't try out. You are the one having to make the change though. There is no one else making it for you. I just wish that someone had said about the alternative choices before to me or that they've would have told me at my rheumatoid clinic that they don't actually have medicine to get my fatigue fade away...or that the fatigue is actually big part of the Sjögren's

Here is a few links to amazon.com:

http://www.amazon.com/s/ref=nb_sb_ss_i_0_11?url=search-alias%3Daps&field-keywords=ashwagandha&sprefix=ashwagandha%2Caps%2C817&rh=i%3Aaps%2Ck%3Aashwagandha&ajr=2

http://www.amazon.com/Foods-Panax-Ginseng-Capsules-500mg/dp/B0013OXFF4/ref=sr_1_1?ie=UTF8&qid=1411922038&sr=8-1&keywords=panax+ginseng

These two cost less than 0.10 capsule.

I'm sorry if I sound harsh but English is not my native and in Finland we usually prefer to go to straight to the point. Sorry. edit:

And I'm sorry for you to hear just now different ways to manage your sickness and not 4 years ago...