At this point, there are no solutions, just treatments for the symptoms. One thing you have to realize this disease have to be fought and dealt with.
First, dry mouth, I’ve cracked 6 teeth in 3 years. Start by using some sort of dissolvable chewy like OraCoat XyliMelts Dry Mouth Relief Moisturizing Oral Adhering Discs Mild Mint with Xylitol overnight. You need to start getting water in you. I know it’s tough, but everyday you need to get water. And more water than anyone you know drinks. It sucks. You’ll see me every day with water. I drink coffee, tea, plus the water. It all has water.
Cavities, get some toothpaste that helps generate saliva. I use Biotene Fluoride Toothpaste for Dry Mouth Symptoms, Bad Breath Treatment and Cavity Prevention, Mint, Fresh Mint, 4.3 Ounc9e. Find a doctor (my rheumatologist) prescribes Cevimeline. I started taking Pilocarpine but it didn’t seem to be helping.
If the dry eyes come, get to an Ophthalmologist. They will probably prescribed Systane and Restasis. I used Systane for a few years then a doctor friend recommended GenTeal. The Ophthalmologist increased my Restasis use from 2 times a day to 3. Tremendous help.
I’m a 47 m, so I can’t really help you with the vaginal dryness. I’m sure plenty of women here can help you with that part that sub here.
One last thing. I’ve started talking to a therapist about this disease and how it effects me. It really is the hidden symptoms in my opinion. It’s a struggle. So find someone you can talk to about it.
My husband gets this (no autoimmune issues though) and has tried everything, including steroid ointment. Only thing that has helped him is Burt's Bees Baby 100% Natural Multipurpose Ointment
I am using CeraVe SA Lotion for Rough & Bumpy Skin. I just switched to it at the start of this past winter. I live in the US Northeast (tough winters), and I am really noticing a difference.
On a similar topic, what are your dry mouth and eye remedies? I posted a discussion on my recent findings on OraCoat XyliMelts Dry Mouth Relief Moisturizing Oral Adhering Discs.
How can s/he say it's unrelated when it's right on the symptoms list? Why don't you get someone who is better aware of current research? https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/symptoms-causes/syc-20353216
> you might look into a TENS unit
Just bought this yesterday, /u/nachomomma55. I had one already, but the wife uses it a ton and I wanted one for myself.
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
This is the one I use. Nidra makes a couple different ones and there are a bunch out there made in a similar way. I actually just bought this one because I lent my daughter the one I had and she absconded with it lol
The only thing that works for me anymore is the Jack Black Intense Therapy Lip Balm. I use Aquaphor on other parts of my dry skin still, but chapstick, carmex, shea butter, coconut oil and others stopped working on my lips a long time ago. I've been on the Jack Black train now for maybe 6 or 7 years and it's still soothing and I wake up in the morning with a nice coating of it still lingering on my lips.
It sounds like your lips are really damaged though, so you also need to get that swelling down. Try a wrapped ice pack (not bare - you don't want that to stick to your skin) and see if it helps the swelling come down, then try the Jack Black if you can. I swear by it now and it's worth every penny.
I chose this one. Only one I've used so IDK about other brands, might be better options out there.
I love these
They shoot the dose amount right into your eyeball instead of having to wait for the drop (which I usually fling somewhere else with my shaky hands by the time it finally drops.
/u/EngineeringAvalon is on point. My question, are you putting drops with preservatives in your eyes? I would suggest stopping that immediately. That’s not good for you case (and ours) of dry eyes. You need this ALCON GenTeal Tears Lubricant Eye plus when the eye doctor prescribes Restasis
It's just 100% pure lanolin, which is a semi-solid, about the texture of the lip balm that comes in a pot. It is the only thing that works on my crazy dry lips.
NOW brand Pure Lanolin on Amazon comes is a reasonable sized container, and costs about $11. That should be enough to last a few years at least. It is 100% natural, with only one ingredient.
NOW Pure Lanolin
Honeywell HUL520B Mistmate Cool Mist Humidifier Black With Easy Fill Tank & Auto Shut-Off, For Small Room, Bedroom, Baby Room, Office https://www.amazon.com/dp/B00NWA7GOI/ref=cm_sw_r_apan_i_VDHBS7T5RS9XQMRWYT81
We use this bad boy personally in our room and our kids'. Fantastic, long term purchase! Don't dial it up too high or everything in the room will be wet to the touch!
Have you tried XyliMelts? They stick to your mouth at night and prevent it from drying out while you sleep!
REVLON Moisturizing Relief Paraffin Bath https://smile.amazon.com/dp/B003ZWEW1S/ref=cm_sw_r_awdo_navT_a_Y0795N45VQTEYMQ6SDZB
Therabath Paraffin Wax Refill - Use To Relieve Arthitis Pain and Stiff Muscles - Deeply Hydrates and Protects - 6 lbs (Lavender Harmony) https://smile.amazon.com/dp/B000FEKMQI/ref=cm_sw_r_awdo_navT_a_4PX16AHAGS86QACXSY6N
otc - something like this https://www.amazon.com/MediViz-Eyelashes-Meibomian-Inflamed-Conditions/dp/B07LBJHST7/ref=sr_1_6?crid=32PYL8SULEBG&keywords=eyelid+wipes+blepharitis&qid=1644348342&sprefix=eyelid+wipes%2Caps%2C97&sr=8-6
Looks like the price is cheaper for black but even white went down. Limited-time deal: TUREWELL Water Flossing Oral Irrigator, 600ML Dental Water Teeth Cleaner 10 Adjustable Pressure, Electric Dental Pick Flosser for Teeth/Braces, 8 Water Jet Tips for Family (Black) https://www.amazon.com/dp/B087717HRR/ref=cm_sw_r_cp_api_glt_i_dl_R8PE8DMVGPSE9X27C0DM?_encoding=UTF8&psc=1
I’ve had it for a few years now and it’s still going strong.
I swear by OraCoat Xyligel Dry Mouth & Lip. For years my lips cracked and peeled constantly, nothing helped. They bled, they looked like they had sores. It was awful.
I apply the XyliGel to my tongue and my lips at night. It has an odd texture, almost like a cross between Vaseline and a gel, with a little grit. Don't worry, the grit just kina dissolves very quickly and you can't taste any kind of Vaseline-y film. I pat it into my lips for a few moments, then apply an occlusive on top, whatever I have on hand; Aquaphor and Homeoplasmine contain moisturizers, Vaseline is strictly occlusive.
This product is miraculous. It only takes a tiny amount, a tube will last a long time. It makes my lips feel so soft and plump. It has also helped my tongue a lot. I also have lupus and Psoriatic Arthritis and get a ton of sores on my tongue. This gel helps keep my tongue moisturized at night, much more so than Biotene gel. I would prefer it not have a citrus flavor, but I find it to be non-irritating, and the flavor is subtle, so I cannot complain.
OraCoat XyliGel 1 Pack Soothing Dry Mouth Moisturizing Relief Gel with Xylitol, Sugar Free, for Dry Mouth, Stimulates Saliva Production, Non-Acidic, Daytime and Night Time Use https://www.amazon.com/dp/B07J6SR4BW/ref=cm_sw_r_apan_glt_i_6J5BTQ79X5GXZ7D0A79J?_encoding=UTF8&psc=1
Do you exercise? I’ve worked my way up to 4 mile walks a day (at 4+ mph). I know you have the fatigue factor, but exercise brings strength and chemicals (natural) to the body that help it combat fatigue.
Also, I would recommend Meletonin before 30 mins before bed. It helps me when I get off a good sleep rhythm
I have had 5 cracked teeth in 3 years. I had 3 root canals in 2 years (might be caused by the older filling materials they had in the 70's and 80's when I was a kid).
This is what I am doing to try to treat the symptoms:
If the body doesn’t need (think) the water the it expels it. The best way to counter this, as another comment said about the electrolytes imbalance, add electrolytes to the water. I use something like this
Could be Sjogren's related, or maybe not. Either way, if you don't like your dermatologist, trying another one. Searching or posting on nextdoor.com is a good way to find recommendations for local resources.
I am a software engineer. It has been brutal on my eyes. Getting the eye dryness under control is one of my main goals of each and every day.
This is my strategy for my eyes:
My Rheumatologist told me to try over the counter lipoic acid. I take it daily and haven’t had any of the nerve pain since I started. I get mine on Amazon- link below.
Doctor's Best Stabilized R-Lipoic Acid, 200mg/60 Count https://www.amazon.com/dp/B007ZBG6AK/ref=cm_sw_r_cp_api_glt_fabc_MN5HZC2HAM0QJ6DD8PQ1?_encoding=UTF8&psc=1
I bought these two and they’re very helpful The Hashimoto's AIP Cookbook:... https://www.amazon.co.uk/dp/164152488X?ref=ppx_pop_mob_ap_share
The Autoimmune Paleo Cookbook: An... https://www.amazon.co.uk/dp/1743368194?ref=ppx_pop_mob_ap_share
I’ve never tried this device, but I do have my strategy for saliva:
I tried a sleep mask recently at the advice of my eye doctor. This was before I tested positive for Sjorgens and thought I just had dry eyes. I do think it helps. I got this one.
Mavogel Cotton Sleep Eye Mask - Updated Design Light Blocking Sleep Mask, Soft and Comfortable Night Eye Mask for Men Women, Eye Blinder for Travel/Sleeping/Shift Work, Includes Travel Pouch, Black https://www.amazon.com/dp/B07D3M6892/ref=cm_sw_r_cp_api_glt_fabc_MBCH5TQYGFEPNTFH1X2V?_encoding=UTF8&psc=1
So, I have to give presentations at work. The best thing I found was Ice Breakers. If they sit behind you let lip in between your gums, it lasts long, and it doesn’t impede your speaking. Start getting the water into your body too. I (and from what I gathered most) get about 1.5-2 gallons a day. I also put these in my mouth at night.
I’ve been using Biotene Fluoride Toothpaste for more than a year now. I have found it is quite helpful for my dry mouth. I just checked it out and it is SLS-free. Didn’t even know that was a thing
You’re welcome. You know what I just discovered? I can use ice breakers to get the saliva going. I love chewing on gum, but when I’m out for my 4-5 mile walks it gets annoying chewing. It’s so nice to just put the ice breaker in between my gums. Make sure you check out OraCoat XyliMelts Dry Mouth Relief Moisturizing Oral Adhering Discs Mild Mint with Xylitol, For Dry Mouth, Stimulates Saliva, Non-Acidic, Day and Night Use, Time Release for up to 8 Hours, 100 Count. They changed my nighttime routine. Also, changing tooth paste helped a lot too. I like this stuff: Biotene Fluoride Toothpaste for Dry Mouth Symptoms, Bad Breath Treatment and Cavity Prevention, Mint, Fresh Mint, 4.3 Ounc9e
This works well for me. I save it for the really flarey dry spells and use genexa saline in bt Ponaris Nasal Emollient 1 oz https://smile.amazon.com/dp/B000NB5BFA/ref=cm_sw_r_cp_api_glt_fabc_KZ89PJKC7NXRCNYZ99CF?_encoding=UTF8&psc=1
no, I'm in Europe. I think it's Swedish
have you tried physical therapy? I've been through three rounds over the years and its helped me every time. it doesnt work for everyone but it's worth a shot.
the other things that have helped me are the thera cane and just straight up sleeping on the floor. I can't sleep on anything soft because it feels like it makes my body collapse in on itself and put pressure on the nerves that go through through my shoulders. I bought a firm mattress but I was gifted a 3" floor mat for Christmas and have been sleeping on that ever since and it's done wonders.
oh my gosh - don't feel silly. I totally SUCK at math conversions and am always checking for cooking as US and Canada amounts are written different in ingredients. SO its just auto pilot for me to check.
And OMG You made me laugh (not laugh at you!) but you just reminded me of my father who hates the "taste" of water lol. But I'll give you some tips if you like...
add fruit to it or lemon or fresh mint... but I LOVE adding fruit. I bought a pitcher that has an infuser built into it and add my fruit in there and fill her up with water... you can get them in water bottles too. This is the first one to come up, but I know I've bought them at the dollar store before... https://www.amazon.ca/Brimma-Proof-Fruit-Infuser-Bottle/dp/B010EAR6YI/ref=asc_df_B010EAR6YI/?tag=googleshopc0c-20&linkCode=df0&hvadid=293032423357&hvpos=&hvnetw=g&hvrand=12934785845402863950&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=1002323&hvtargid=pla-316005419468&psc=1
The more you drink water the more you will crave it.
you can also get those water flavour adders. Just be careful of taking in too much artificial sweetener
This disease is challenging. Best way I know how to handle it is attack each issue separately. I have low potassium, so I eat mushrooms, bananas, kale, coconut water, etc. I have dry eyes, I see an ophthalmologist and they prescribe Restasis and GenTeal. I have dry mouth, so I brush my teeth with Biotène, and use OraCoat XyliMelts Dry Mouth Relief Moisturizing Oral Adhering Discs Mild Mint with Xylitol at night. I drink as much water as humanly possible about 2 gallons.
So research and find out what foods have B12. Reach out to a Nephrologist and get them to start tracking this (they are going to want to make sure your liver and kidneys). I was sent to one by my rheumatologist for a high Creatinine. That’s when it was discovered I had low potassium.
Good luck, keep reaching out and sharing. This is a hard fight and we all can use the support
I’ve bought and returned a bunch of noisy humidifiers this year. This Elechomes is my favorite by far. Easy top-fill design. No filters that require more force (and thus noise). No nooks and crannies to get moldy. I use tap water filtered just using a Brita filter. I bought a couple several months ago and have been happy with their performance so far.
I’ve bought and returned a bunch of noisy humidifiers this year. This Elechomes is my favorite by far. Easy top-fill design. No filters that require more force (and thus noise). No nooks and crannies to get moldy. I bought a couple several months ago and have been happy with their performance so far.
I’ve bought and returned a bunch of noisy humidifiers this year. This ElechomesElechomes is my favorite by far. Easy top-fill design. No filters that require more force (and thus noise). No nooks and crannies to get moldy. I bought a couple several months ago and have been happy with their performance so far.
Consider this, too:
(Haven't tried it; might get it for my elderly father)
I recently purchased multiple humidifiers + a hygrometer to measure humidity and keep it between 50-55% in the house. Then I use saline nose spray for my sinuses and Vaseline in my nostrils. The Vaseline helps a lot, but nothing helps as much as the humidifiers. Before I got them, I found out the avg humidity in the house was around 25% because of our gas fireplaces and central heat. I used to live in an appt with a steam radiator and never had dry nose issues, so I kinda put 2 and 2 together and realized what the change was.
Just that simple change of adding moisture to the air makes a huge difference!! My skin looks WAY better and my eyes are a tiny bit better. This is one of the humidifiers I have that works really well and you can get hygrometers on Amazon for like $10.
This looks like it. https://www.amazon.com/Upgraded-Contoured-Adjustable-Comfortable-Blindfold/dp/B07ZCQNNHB/ref=mp_s_a_1_96?dchild=1&keywords=soft+eye+mask+for+sleeping&qid=1610140221&sprefix=soft+eye+mas&sr=8-96
A flare up is when you have a generally higher amount of symptoms than an average day. Its usually triggered by something (especially stress, going past your fatigue point) and you'll have to figure out what your triggers are before you stop seeing every day flareups.
Plaquenil can take a few months to really work, and some people have to take a higher dose or move to another medication. Stay in contact with your doctor about that and don't be shy about describing your pain.
There are medications that your doctor can prescribed you. I use difenac sodium gel on my hands bc i have severe arthritis there from Sjogrens, and I take a daily NSAID called Celecoxib thats a little stronger than most otc NSAIDs.
I have a bone spur in my neck, and combined with Sjogrens inflammation I get terrible headaches. As a result I've moved to this pillow:
It takes some getting used to. Its not a comfy, cozy pillow, but it holds my neck in the right position and keeps my shoulders (which tend to try to migrate to my ears) in place.
Regarding work, all I can say is to do your best to protect yourself. Splurge on the most comfortable shoes you can find. Wear nitrile gloves for delicate work if you have any neuropathy symptoms (assuming its not a safety risk). Taking breaks frequently can help reduce overall fatigue. Don't let yourself get into one position for too long without stretching.
And don't forget that you can ask for reasonable adjustments to your working conditions per the Americans with Disabilities Act (assuming you're in the US). It can be intimidating to ask for what you need, but its you're body and its up to you to protect it so that you can have a better future quality of life.
My eyes are pretty bad all the time, but I think they just get tired after a long day. I had my tear production measured, it's essentially zero. I also have meibomian gland dysfunction so it's a dry eye double whammy.
For the Moringa my mom usually makes capsules for me from scratch, she has a powder she uses and a capsule making machine. The fresh stuff works better than the stuff pre-packaged. She has RA, so there is a family history of autoimmune, but it could be something other than Sjogren's too for me.
For the sea buckthorn, this is the one I use: https://www.amazon.com/gp/product/B00CKWX1DE/ref=ppx_yo_dt_b_asin_title_o02_s00?ie=UTF8&psc=1
Try this one. It’s super cheap and not much cleanup required. And because it’s steam, I assume no bacteria build up in the vapors. I’m super lazy and it’s the only one I’ve been able to consistently use (bc it’s so low maintenance).
I use this lip balm
It's the only thing that I use now. I have tried every lip product on the market since I was a teen!! I used to have dry, peeling lips. No more!!! Now, lips are plump, hydrated, and soft.
I just got this Magitec from Amazon and I love it! It has a big capacity and is very affordable. I noticed a difference immediately and I tend to have it on a high setting for the most benefit next to my bed.
Hycosan is my jam. I have to get it from the UK but I love that it shoots a dose (gently) into your eye because my hand is too shaky to let it drop in via gravity alone. It's all I use.
I use something similar called a Thermalon dry eye compress and it's one of the MVPs in my Sjogren's relief tool chest. Rather than use the elastic headband, I gently press the mask on my eyes with a downward motion to push the oil and debris from my lids. Then I swipe the eyelash area with a lid wipe to remove what was express. It's instant relief and also relaxing!
I have two compresses. The compress takes about 24 hours to dry after cleaning, so I have an extra for back up to use while the other is drying.
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.
Hey, in case you're interested, I can give a personal review now...
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.
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.
My rheumatologist has been hesitant to put me on meds because my dry mouth isn't too bad yet. But she does have me using Biotene before bed every night and once I wake up every morning. I've also added a humidifier to my room and moved my normal bedroom fan a little further way so that the air is still moving near me, but its not blowing in my face.
Your case seems a lot more advanced than mine, so definitely talk to your rheumatologist.
What country are you in? I get them from Amazon because most stores don't have them. I like the ones with mint in them, but they make one without mint, too.
Clinpro paste is amazing. I used to have to get it from a dentist but it makes them so much stronger and is worth every penny. It’s expensive for paste but I only use it at night and one tube lasts 6 months or more. Amazon has it now: https://www.amazon.com/3M-Clinpro-Cavity-Toothpaste-Vanilla/dp/B00K5HV1HO
Yes, I tried Barlean'sflax seed oil semi recently- I also use their fish oil. I really think I noticed a difference when I added it my already robust fish oil supplementation- just less dry eyes. Not scientific, but my two cents worth. That reminds me, I didn't buy more when I ran out and my eyes HAVE been drier so I will be reordering. I really recommed using both the fish oil and the flax seed.
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.
very strange, because for my 3 rheumatologist to be impossible in the absence of ANA and ENA, I'm in the same situation.Now I would try what you have written this girl in Italian forum: http://www.freeforumzone.com/d/6521086/La-Sindrome-di-Sjogren/discussione.aspx?idm1=133415648&pl=9
EGCg tè green
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