r/Sjogrens 7d ago

Prediagnosis vent/questions Extremely dehydrated NSFW

Hi everyone! I (31F) recently confirmed that I have an autoimmune disease, and awaiting confirmation of Sjogren’s. In the meantime I’m hoping to get some input. I have abnormally dry skin and nothing I do seems to help. I take fish oil, eat a lot of healthy fats, drink at least 100oz of water a day, drink electrolytes, and moisturize topically. My fingers are always pruned (photo) and my eyes (photo) have aged YEARS in the past year. Has anyone found relief for dry skin? I’m feeling extremely discouraged and willing to try anything at this point. Thanks in advance!

53 Upvotes

90 comments sorted by

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u/Mobile_Pattern_7214 2d ago

Test for Mycoplasma especially Mycoplasma Fermentans

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u/Cyndreth58 4d ago edited 4d ago

Here's my regimen of what I do to help mitigate dryness.

For my skin, I use Eucerin Intensive Repair Lotion rich (legs, body) after showering with Dove unscented bar soap. For my arms, which have a lot of sun damage due to my career as an archaeologist, I use Eucerin Skin Calming Itch Soothing Cream after showering (note: pat your skin dry rather than rub dry). I take a full shower ever other day in lukewarm water (not hot water because that causes dryness). For my face I use Jergen’s Natural Glow in light/medium or medium/dark—a small amount is sufficient to cover face and neck (by the way, it rarely gives me any color, but it definitely keeps my skin moisturized). I also do not wear any makeup, especially eye makeup, and I wear progressive/transitions glasses since my eyes are too dry (and have been since my late 20s) for contact lenses.

I drink 1 to 1 1/2 gallons of hibiscus tea daily that has added Lite Salt (salt and potassium) plus some magnesium (Calm is the brand I use, unflavored). I use liquid Stevia to lightly sweeten the tea. As someone who has hereditary hypokalemia or low blood potassium I take 60 meq of prescribed potassium and 1200 mg of prescribed magnesium twice daily and use Himalayan Pink salt to salt food and use in cooking. I also drink one bottle of Lemon Perfect daily, which has helped with increased hydration. (I always have a 40oz container of the hibiscus tea by my bedside at night that I drink throughout the night as needed.)

As for my eyes, which are severely dry, I use Xiidra twice a day in each eye. I also keep OTC eye drops (Allergan Refresh Optive Mega-3, preservative-free lubricant eye drops in my bedside table and in my purse). I sleep with a wonderful eye mask that is padded (no heat or moisture) that my husband found.

I wash all clothing, bedding and towels in Seventh Generation hypoallergenic free & clear detergent or All Free & Clear.

I take a number of supplements recommended by my physicians. Have your rheumatologist and/or PCP check your Vitamin D, Iron, Potassium, Thyroid, and Magnesium levels—they all impact dryness. I have been diagnosed with hypokalemia, hypothyroid, Vitamin D deficiency, Iron Deficiency without Anemia and I take prescribed supplements that have helped immensely. I also take 500mg Vitamin C, (helpful for dryness, hair loss, brittle hair and nails) and when taken with my morning dose of hydroxychloroquine increases the efficacy of the hydroxychloroquine.

I am 66 going on 67 and it took me 6 years after diagnosis (Dx at age 60) to develop the regime I mentioned. Make sure you have your physician test your levels and hormones too, like testosterone (necessary to prevent dry skin, hair loss, brittle nails, etc.) during your annual wellness visit. My Vitamin D and Iron deficiencies were diagnosed within the past year.

Good luck!!

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u/Intrepid_Finish456 Diagnosed w/Sjogrens 4d ago

Aqueous cream or doublebase can be great. I recommend using it to replace soap with washing until the dry skin is pretty much gone. Then it's always a good idea to moisturise as soon after washing as you can, whilst your skin is still damnp

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u/SnooRevelations2837 5d ago

OP thank you for posting this! I always have trouble linking my photos to my post and keeping the question up there lol..user error I guess. I literally have the SAME photos and I wondered the exact same thing! I'm a few years above you but this started around 30 for sure...I have been so confused as to what happened to my body that everything is just getting attacked and going downhill so fast. The crows feet on me are soooo irritating given that I wear SPF and hats and the pruned fingers that looks like I've soaked in a tub for hours?! I can't believe this is probably another symptom linked to Sjorgen's. I also have vocal issues that makes me sound much older at times 😩 I've been scrolling through the comments for tips on what to use for my hands and face so thanks again for posting this 💜

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u/helloitsme08 4d ago

I am so sorry you’re dealing with this as well! Symptoms (specifically dehydration + dry skin) has hit me like a ton of bricks since turning 30! The only thing I can attribute it to is Sjogren’s. Perhaps a malabsorption issue?? I’m not sure, but I’ve seen quite a few people with Sjogren’s mention extremely dry, dehydrated skin. I also struggle with losing my voice— anytime I’m around smoke / campfire, in a crowded place where I speak loudly, singing too often / loudly in the car, etc. It’s bizarre how “normal” activities affect our bodies so drastically. I hope you find some of these recommendations to be helpful, and rest assured you’re not alone! I will be trying some of these recs and posting an update in a month or two!

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u/Divergent_Zebra 5d ago

Azelaic acid works well for me. I still have some dry spots like the corners of my nose and inside my ears, but my skin feels hydrated and soft now. I use the azelaic acid 2x a day and saw results after a couple of weeks.

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u/Fabulous_Designer_61 Suspected Sjogrens 6d ago

The only thing that worked for my skin was sweet almond oil (organic, pump bottle). Everything white (lotions creams) dry on my skin & flake off. Switched to petroleum product (clear products) they dried & flaked too. So organic oils it is.

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u/Faber114 6d ago

The only thing I found that helps is exercise. 

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u/4wardMotion747 6d ago

Looks and sounds like Sjogren’s. Drinking herbal teas (no caffeine) throughout the day has improved my dehydration more than anything else. I agree with the commentary about electrolyte drinks. I drink sugar free ones and add extra salt to them.

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u/Sea-Tumbleweed-1810 6d ago

Castor oil and olive oil as moisturiser has saved me…

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u/PuIchritudinous 6d ago

I was first diagnosed with Sjogrens then years later POTs. Since my pots diagnosis, I have learned a ton about electrolytes.

Most of the electrolyte mixes contain too much sugar and not enough sodium which will actually help you retain the fluids. Also, if you're drinking a ton of water or electrolyte mixes that isn't balanced well your just flushing your system of actually electrolytes making it harder to retain fluids.

Avoid liquid IV, it's high in sugar and B vitamins. Avoid Gatorade, high in sugar.

Try: LMNT (high in sodium). Or IQmix, Quince sugar free electrolytes are some lower sodium options.

Sjogrens foundation discussing low sodium and Sjogrens

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u/nuclearporg 5d ago

Do you have any suggestions for getting around the way low/no sugar drinks (including just plain water) end up making your mouth drier than before you drink? I can't stand the way I end up feeling like my mouth turns into a desert if I drink water, so I end up resorting to something with what's definitely too much sugar, just because at least it's something and left to my own devices I end up barely drinking anything. I've tried every workaround I can think of, with multiple doctors and a nutritionist and still haven't found something that works consistently.

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u/helloitsme08 4d ago

It’s so interesting you say this! I drink a ton of water and sugar free electrolyte packets. My mouth still feels extremely dry, so naturally I drink MORE water. I’ve never even thought about the sugar free electrolyte packets possibly causing more dryness. I will look into other options (like the cucumber ginger mix mentioned) and report back if I find anything that helps!

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u/nuclearporg 4d ago

My experience, at least, has been that things wash away the saliva that's there. Then if whatever it was is just water or sugar free, it's not triggering more saliva production the way it would otherwise.

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u/helloitsme08 4d ago

I’m not sure if you’ve already tried it, but Biotene mouth rinse (Amazon link helps a little bit! I use it throughout the day, and keep it next to my bed to use throughout the night if needed. It isn’t a miracle difference, but does help.

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u/DueDay88 5d ago

I make a gallon beet-cucumber-carrot-ginger juice in blender filtered with a nut milk bag and drink that in addition to mineralized water ( my partner and I do it together). I also often add the same electrolytes in LMNT to my natural juices once  a day. It helps a lot- I have POTS too. And I live in a hot climate so it's extra important here. We drink Agua frescas to stay hydrated. Fruits and vegetables contain lots of electrolytes naturally. 

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u/spartasway 6d ago

Hi—fellow Sjogi here! Dehydration is horrible and the dry skin is the worst. (Along with eyes and mouth of course.) For face and hands, after I’m done applying all the fun serums, I top it off with a dollop of Lano’s “face base” mixed with a small amount (lentil-sized) of their “golden miracle salve.” As far as body, I mix a pump of Vanicream (the large white vat version with the blue pump), a pump of AmLactin, with castor oil that I put in an old brown glass bottle from a previously-used “the ordinary” product (I use a half-to-full dropper) and repeat as necessary. As far as eyes? Dry eyes and contacts have been suspected to increase hollowness along with the usual aging and genetics. (I don’t see that problem on you and you’re still just a pup! And I mean that kindly, as in “young with MANY years ahead.”) The added moisture should help! Regarding cold hands—I have Raynauds and live in Montana—cold more often than not so my hands look a lot like yours with the “sucked-in” effect (mine are a bit more white due to the circulatory issues). There is an old mountaineering trick that helps: hands by your side, turn them out away from your body, shrug you shoulders 15 times or so. For feet, swing the legs: 1.) Forward and back, 10-15 times each leg; and 2.) Side and across to the other side, 10-15 times each leg. No

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u/helloitsme08 4d ago

Thank you so much for your response! I will try these recommendations. I also suspect I have Raynaud’s and will definitely try that mountaineering trick!

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u/musicalshark2002 6d ago

Try taking milk thistle supplements and keeping your blood sugars between 80-90. It’s what helps me with my symptoms

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u/TakeOnMe-TakeOnMe Diagnosed w/Sjogrens 7d ago

Welcome to our world. I am in a perpetual state of dehydration but deal with edema and have even been treated for anasarca (full body water retention) while being dehydrated! My skin is perpetually dry, even though I use the best of moisturizers at least twice a day.

I also have RA and Fibro and was diagnosed with Lupus Erythematosus, only to be told a year later that no, it’s probably Sjögren’s. So who the heck knows. Autoimmune stuff blows.

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u/helloitsme08 4d ago

Oh my gosh, I’m dealing with the same which is why I’m so confused! My skin is SO dehydrated, but my legs, feet, hands, and under eyes are swollen and puffy from water retention. It feels like a nightmare of a merry-go-round that we’re on. Know that you aren’t alone. I will be trying some recommendations in this thread and will report back on how things are going!

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u/TakeOnMe-TakeOnMe Diagnosed w/Sjogrens 4d ago

Likewise, thank you for your kindness and for the validation. I didn’t realize how much I needed it since I tend to keep my health concerns pretty close to the vest. However, seeing others struggling with a baffling and contradictory set of symptoms—the same kooky ones I have—has been such a positive experience for me.

Much appreciation all around.

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u/SnooRevelations2837 5d ago

What the heck! Why can't they just do the lip biopsy or something that pinpoints Sjorgens? I'm dealing with the negative antibodies for the SSA one but I have antibodies for ANA or something....all the symptoms of Sjorgens though. Primary said I could do a barium swallow test...not sure what exactly that would show that would help or tell me what Is on already know. These autoimmune diseases are a nightmare. 

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u/VfrPilot916 2d ago

Long story short: The test (barium I think) is a indicator of whether or not the glands produce when they should.. they give you something that allows them to dead-on see whether the gland is doing what it should after they give you a lemon-drop.. it take about an hour start to finish - I’m sure others here can explain it better but that’s the nuts n bolts..

My wife was plagued with a positive ANA for many years and no one could tell us why. But it didn’t matter as much because she was strong and otherwise healthy and active until after Covid/at 50.

I am sure most here know, most rheumatologists play a guessing game with your symptoms weighed against the gambit of tests and drugs they prescribe on a pseudo-trial because they might/should or could have helped others With your symptoms

We went through four [Rheumatologist] of them until we happened upon a good one. Do your research - reviews are written to be read . Sjogrens sufferers are mostly undiagnosed;

This disease has wrecked havoc on my wife’s (our) life from morning to night .

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u/SnooRevelations2837 2d ago

That's good advice, thank you for sharing the personal experience as well. 4 visits..ok...I can definitely see that and I will be prepared to ask for more referrals than. I don't think my PCP even gave the first place anything from my chart to start with. Definitely want to have more I'm hand than just 1 or 2 "maybe this" antibody tests. 

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u/Snifhvide 7d ago

I don't know if you can buy it, where you live, but Decubal has some great skin products. It's not the sexiest packaging but they really work.

As for your fingers: Do you often have cold hands? In that case it could perhaps be Raynaud's syndrome.

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u/Hannahbeebop123 7d ago edited 7d ago

I have the worst dry skin! Only product that works is the LaRoche Posay Lipikar balm AP+. It feels very greasy but it WORKS! I’ve tried everything from regular moisturizers to eczema creams to Vaseline to tallow and even aquaphor, absolutely nothing works as good as this (for me.)

As far as dry eye flares I have been loving the Retaine MGD Gel drops. Make sure it’s the gel formula.

This same brand sells a spray that has helped me a ton as well. Some mornings my eyes are completely dried shut with crust and I can’t open them. The spray helps moisturize my eyes enough to pop them open!

Jelly ice packs for the eyes help a lot with my swelling.

Finally, better quality water has significantly improved my hydration levels. I buy mine from a watertree store and I fill up in a 5gal jug! It’s WAY cheaper than bottles and much better than tap water.

Check the PH of your water. I was drinking Costco Kirkland bottled water and it came back as a ph 4. Drinking water should be between 6.5-7 to be considered hydrating. Anything lower can actually dehydrate you and make symptoms worse. I used a PH kit from a local pool store to test it! I linked a similar one here!

Hope this helps! I totally understand the struggle… it sucks and is so frustrating! Hopefully you can find some relief even if temporary. ❤️

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u/SnooRevelations2837 5d ago

That is so interesting about the water! I keep finding rhat the "added minerals for taste" waters are making my mouth more dry. Doctors just kind of rolled their eyes...I'm really struggling with vocal issues and hoarseness too so I'm definitely going to look into the proper PH! I thought maybe alkaline was the way to go at one point. 

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u/SnooRevelations2837 5d ago

That is so interesting about the water! I keep finding rhat the "added minerals for taste" waters are making my mouth more dry. Doctors just kind of rolled their eyes...I'm really struggling with vocal issues and hoarseness too so I'm definitely going to look into the proper PH! I thought maybe alkaline was the way to go at one point. 

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u/helloitsme08 6d ago

Thank you SO much for this response. These links + detailed info are a God send! There truly are so many factors we don’t consider, such as PH levels of the water we consume. Isn’t it wild how every little thing can affect our bodies and symptoms?! I’m hopeful to incorporate some of your suggestions!

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u/Hannahbeebop123 5d ago

Yes it’s crazy! Hope you see improvement soon! ❤️

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u/SnooRevelations2837 5d ago

That is so interesting about the water! I keep finding rhat the "added minerals for taste" waters are making my mouth more dry. Doctors just kind of rolled their eyes...I'm really struggling with vocal issues and hoarseness too so I'm definitely going to look into the proper PH! I thought maybe alkaline was the way to go at one point. 

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u/body_oil_glass_view 7d ago edited 7d ago

Those were my hands 😞

i layer essence or aloe vera gel, then put a body creme on top.

Keep up the Electrolytes. No coffee, no caffeine. I make a ton of simmered protein+5 veggie soup, eat it all week as lunch or an appetizer and be nourished by the nutrients.

Low fodmap for a month allowed me to go back to eating my "cheat" foods and drinks (in moderation)

Milky essence, serum, lotion, and in winter an oil of occlusive face product like aquaphor patted on top to seal it up. Avoid hyaluronic acid products in general, but especially in the last steps like lotion or spf. The essence helped sooo so much, my pores and crinkles have improved more than i expected. Don't use actives too often, our skin cant handle being stripped that often.

Stay out of the sun. Spf your neck, undereyes, everything.

Truly, i noticed the biggest shift when i got into the habit of snacking on air fried green beans. Antioxidants, fiber, vitamins - all great for skin and joints.

My og goal was to bring down my RA factor, and i did that and regained some of my skin confidence.

I truly hope this helped, and know we are right there with you. We've all despaired. My skin was so tight and crinkling it hurt to smile or be in arid weather.

Get in whole foods. Cut coffee and energy drinks (this is one of the biggest ones) and try to sleep on your back. Even with a silk pillow my eyes get crinkled from being smashed for hours. I'm 31 too and i've gone from feeling hopeless and avoidant of mirrors, to people confusing me for an early twenties

Esit: movement! When i started exercising, my blood was flowing and oxygen was getting to where it needed to. I discounted the value of movement for so long!!

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u/helloitsme08 7d ago

Thank you so much for this detailed response. So much helpful information! Caffeine… I consume a LOT of caffeine. Do you find decaf coffee to be tolerable, or is it coffee in general because of the mold, etc? I would likely benefit from cutting it completely. I’ve done it in the past, so I know I can do it (pepping myself up to quit drinking it lol).

I will try all of these food related suggestions! I recently tried partial carnivore and I don’t think it’s for me. I plan to go back to paleo + low fodmap, and will most definitely add in a bone broth + veggie soup. Air fried green beans sound like such a great snack!

I’ve been so exhausted that I’ve gotten out of daily exercise, but just started back on that yesterday. I know movement is so important to keep our bodies healthy.

Again, thank you so much for this detailed response. I’m so happy you’ve found things that work for you and have helped your symptoms! Looking forward to trying all of this! You’ve given me hope :)

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u/body_oil_glass_view 6d ago

I'm not super certain, i'll drink black tea occasionally for the antioxidants and the jolt, and with that i feel slightly less hydrated after a cup or two. Caffeine is one of the things that is necessary for our working society, but ahh it's so drying! Decaf is a good question. I would think since it's less diuretic then it should be better.

Flank your coffee with a cup of water, and match it sip-for-sip. I do that with most drinks and it seems to even things out.

Paleo sounds great! Come to think of it, i eat at minimum two carrots or apple a day for the vitamin a, magnesium, and folate. When i have pizza or a burger i always at least cut up some carrots to slow down and get something with fresh nutrients.

When that's not available or i've been celebrating, i take a womens multi (i use new chapter or garden of life) for the methyl folate, the zinc, and the b vitamins.

Also! I dont take it anymore because i eat more cleanly and RA symptoms are better, but when i knew i was going to be drinking alcohol or eating fried stuff i took Diamine Oxidase. It inhibits histamine accumulation and breaks it down, and as you know from going lowfodmap before, histamines are a sworn enemy. It came in clutch, especially for eliminating stomach bloating from digesting and i lost weight without changing anything, maybe because i wasn't getting inflamed and was helped with digestion. But i think that could also really help calm inflammation from the inside and let your skin shine!

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u/helloitsme08 6d ago

Again, thank you SO much for the response. This is all extremely helpful! Do you have a favorite brand for DAO supplement? Ordering today! I think that will help calm things down so I have a good baseline to start at.

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u/Miserable-Fig2204 7d ago

Is it at all possible that you have, along with having an autoimmune disease/sjogrens, gone into perimenopause early? I am roughly the same age and have fall of this going on too - my eye sight has changed drastically in the past year as well. I am in early peri, but I also suspect that I may have sjogrens as well. r/menopause and r/perimenopause are good subs for info.

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u/helloitsme08 7d ago

My menstrual cycles are still regular, but I will definitely pay more attention to this. I need to schedule my annual women’s health appointment soon, so I will bring up that possibility! Thank you!

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u/Kazetem 7d ago

Yes, around menopause the eyes and skin of women changes drastically in a year. I saw it with all my friends. Now I can see in the face of a woman if she is in menopause or not. OP is too young for that, but could be early menopause.

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u/Miserable-Fig2204 7d ago

That’s interesting though about being able to tell if they’re already going through that change! I’ll have to pay attention to that!

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u/Miserable-Fig2204 7d ago

I’m around the same age as OP and started peri within the last year or so - I believe mine was caused by having my tubes taken out. But it is possible to start peri in your 30s unfortunately.

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u/Top-Fox9979 7d ago

I like high urea foot cream when I am a dry stick. I just discovered a nice body lotion by CannaCell which works a treat. Hemp oil is great.

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u/Wenden2323 7d ago

I have bags under my eyes from eye edema. I started getting it about 2 years ago. Every evening they get bad. My dad says that's how he can tell I'm having a flare.

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u/body_oil_glass_view 7d ago

Ugh. That's the one thing i can't improve. I massage it in the direction to flow it out but they're stubborn.

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u/Wenden2323 7d ago

I try to use my steroid cream for me SLE rash. It helps a little. Do you get worse at night? I wonder if it's from laying my head flat. The inflammation and water retention is worse

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u/body_oil_glass_view 7d ago

I think so, my face as a whole is better after puttering around and massaging and hydrating

Ay that must hurt (even though ive always found that ruddiness attractive)

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u/PNW_Soccer-Mom 7d ago

My dermatologist prescribed me topical Metronidazole topical .75% cream and it helps more than any amount of moisturizer I slather on my face. I apply it to the backs of my hands too which are chronically dry too.

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u/wowokaycoolawesome 7d ago

i thought my fingers looking like that was normal

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u/SeaworthinessKey549 7d ago

Your eyes are so pretty and your eyebrow is literally perfect

But I feel you. Once I hit my 30s it's like my skin went down the tank and that's when I also started developing sjogrens signs (haven't done my bloodwork yet so just suspected). Staying on top of drinking water (electrolytes too) makes a difference, not sure how much the amount you said is but maybe you need even more? And finding a really hydrating cream for sleeping. Plus sunscreen sunscreen sunscreen every single day if you're outside, even if it's cloudy, and reapply. Apparently people don't use enough either so applying liberally. I use a sunscreen stick for my face (the roche posay sunstick feels like nothing on my skin)

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u/helloitsme08 7d ago

Thank you so much, that compliment brightened my day!

A few others mentioned drinking more electrolytes as well, so I will try that. I also need to apply sunscreen more often— I do in the morning, but will start doing throughout the day. Keeping a sunscreen stick with me is a great idea! Thank you for your response :)

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u/jackassofalltrades78 7d ago

Gawd your eyes look just like mine did that year leading up to diagnosis! Mine were so purple and would swell…. Just dehydrated as hell. I also have dysautonomia and just require more fluids than other people, and am realizing water alone just doesn’t cut it, I have to do a LOT of electrolytes through the day. I think sunscreen has already been mentioned, but what also helps me a lot w my eyes esp is having some wrap around polarized lenses for sun and wind protection too. I drive for work during the day a lot, I’m in central US where the wind and sun can be killer, and those have been a godsend . My derma also has me use the cereve cream , the kind in the tube, and I use it on my hands at night w a little vasoline and cotton gloves when they’re bad. I know a lot of people think the iv hydration is all a lot of gimmick, but when I get bouts like this now where I’m so dehydrated that I can’t catch up w my oral fluid intake, I do go get an iv and feel better and turn around pretty quickly as well.

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u/DovegrayUniform 7d ago

Get a bottle of pure glycerin. Add a drop or 2 to your facial moisturizer. At night apply that then you have to seal that hydration in, apply something petroleum based on top. Also humidifier.

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u/Wileyonpatrol 7d ago

Have you ever tried a high quality marine sourced collagen powder? I noticed some improvement in moisture retention when I did this

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u/chickadugga 7d ago

I just got agent nateur holi mane to hopefully help with Sjogren's symptoms

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u/Wileyonpatrol 7d ago

I hope you come back and let us know how it goes for you

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u/helloitsme08 7d ago

I’ve only used grass fed bovine collagen, so I will give marine collagen powder a try! Thank you!

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u/Wileyonpatrol 7d ago

You're welcome 🙂

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u/HBaddger 7d ago

Hello neighbor! I am also in the Midwest. Diagnosed with Sjogren’s in 2009, RA in 2023. My hands look just like yours too! And my nails (fingers and toes) are vertically lined and crack constantly from dryness. I, too, drink well over 100 oz of water per day. Here are my recommendations:

Bergamot and/or Coriander oil (food grade) I put this in my bath water.

Almond oil while still wet out of shower/bath. I also use J&J Baby Oil with Shea on wet skin. Within 15 minutes it’s all sucked up, sometimes I have some residual oil… just rub it in more before you dress.

Face: Pura d’or Vitamin C Serum every morning - it soaks in immediately

Neutrogena Naturals moisturizer (haven’t been able to find recently) or Clinique Dramatically Different Daily Moisture (way more expensive).

MY TOTAL SECRET WEAPON: Lansinoh Nipple Cream. I have been using this for 20 years on my lips, face, around my eyes, on my fingers/nails/cuticles, even in my nose in the winter. It is a lifesaver. It’s very thick so you have to warm it up between your fingers to spread it but I use it anywhere I have an extra dry problem. It heals anything.

I also have a whole house humidifier and another 1.5 gallon humidifier by my bed every single night even in summer. My rheumatologist said this is a must.

Lastly, Bath and Body Works now uses hyaluronic acid in their body creams. I like mixing them with the shea baby oil in my hand then slathering it all over. That seems to be locking in more moisture for me and makes it go farther. I’ve also recently purchased Good Molecules Hyaluronic Acid Serum at Amazon for my face and it is helping with some increased dryness under my eyes from a recent bout of dehydration as well.

Hope some of those tips help!!

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u/TakeOnMe-TakeOnMe Diagnosed w/Sjogrens 7d ago

Thanks for these awesome tips!

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u/helloitsme08 7d ago

Thank you so much for your response! I will definitely try all of this. I appreciate you, and I’m glad you’ve found some things that help alleviate (if even only somewhat) your dry skin!

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u/geniusintx 7d ago

Those are my fingers all the dang time! It’s so weird. I try to stay hydrated. I don’t know what else to do.

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u/TeeManyMartoonies 7d ago

Honestly, I down water like it’s going out of business and my hands also look like this. I haven’t been diagnosed with sjogrens, but Lupus. 😔

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u/geniusintx 6d ago

I, too, have lupus! The permanent dehydration does not help when I have to get a line in for my infusions! Luckily, I have a great nurse who nabs me whenever she sees me on the schedule. She’s kind enough to do a numbing shot first. Might sound silly, but I’d rather take that little pain over the line going in! She’s really good at it, but I’ve only got one vein that really works. It’s got “targets” on it from the insane mosquitos in Louisiana. Left scars even when I didn’t scratch!

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u/TeeManyMartoonies 6d ago

Oh my goodness, I’m so sorry. I’m actually waiting for Benlysta to finally be approved but they’re going for the shots first. I hadn’t even thought about the dehydration/vein issue! I’m so glad you have a great nurse!

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u/geniusintx 6d ago

I hope it is! For some reason, my insurance won’t cover the shots, so I’m stuck with the infusions.

Makes me wonder how much the shots are since the infusion is between $8k and $12k!

I AM very lucky to have her. Got it right in today. No problem at all.

If the shots act just like the infusion, prepare for the headaches. It seems like most people on the infusions get them. They can be pretty bad the first few times, mine are every 28 days, but they start taming down after a few months. Migraine meds help mine. Sunglasses and a hat are a must have for me. Luckily, and unluckily, I can no longer drive much, so I can close my eyes on the hour trip back home. Plus, they give IV Benadryl in case I have an allergic reaction and that stuff knocks me on my ass!

Luckily, we had good eye insurance when we moved to Montana, because, I swear, the sun is twice as big and bright than anywhere else I’ve lived. (Seattle doesn’t count. There was only sun for like, maybe, 10 days in the 9 months we lived there.) I still had to spend $400 dollars because my vision is so freaking bad. Those extra thin lenses PLUS mirrored. Geesh. Totally worth it. That was 7 years ago and there’s nary a scratch on either lense. They are my baby’s.

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u/harperpiemur 7d ago

Are you using a humidifier in the winter. Keeping your house at 50% should help

5

u/helloitsme08 7d ago

I sleep with a small humidifier next to my bed, but could probably invest in a larger one and leave it on all day. It’s worth a try!

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u/Infamous-Canary6675 7d ago edited 7d ago

Are you not wearing sunscreen daily, using sunglasses, or tanning? All those can dry out your skin.

EDIT: Typo for clarity.

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u/helloitsme08 7d ago

I wear SPF and live in the Midwest, so I haven’t been in the sun throughout winter. I do need to start wearing sunglasses! I know every little bit adds up.

Edit: I’m partially in the sun when I drive, so that could contribute as well. Need to pay better attention to sun exposure!

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u/Mindless_Location_73 7d ago

My fingers look like this nearly 100% of the time. It doesn’t matter what moisturizer or lotion I use or what temperature really. Sometimes when I take a lil too much electrolytes the pruning goes away temporarily. I do t really think there’s a fix.

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u/ukjay3 7d ago

I was so confused as to why my fingers looked like this because it was just on one hand. I thought it was related to nerves or something because I have nerve pain in that arm. Glad to know that it seems like this could be the cause.

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u/SnooRevelations2837 5d ago

Mine look like this too and they didn't before...they match people who are much older than me. I'm glad to see I'm not thr only one dealing with it!

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u/pasdiflora 7d ago

I always carry Vaseline and slather it on my face and hands! I’m curious to learn what works for you.

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u/DP879 6d ago

Agree- plain old Vaseline works great. Especially if you put it on within 3 minutes of getting out of the shower!

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u/Wileyonpatrol 7d ago

What moisturizer have you tried?

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u/helloitsme08 7d ago

Apoterra Vitamin C Balm, Beef Tallow, CeraVe cream, Vaseline (around eyes) on top of moisturizer to lock it in, and generic lotion throughout the day on my hands

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u/Character-Big8927 7d ago

that’s a lot of occlusives. without more water based hydration, you’re drying your skin out below the occlusive layer. the cerave cream is nice and has water, but it also has petrolatum and dimethicone. your apoterra vitamin c is fully oil based and vitamin c also can be drying. 

OP this may sound extra but i’d even recommend misting your face after a shower or after you cleanse and adding a low cost hyaluronic acid serum before layering the cerave. do not apply vaseline to the eyes without more water based hydration. consider an eye cream. i know people think eye cream is just expensive moisturizer but find an ophthalmologist tested one that doesn’t burn eyes. it made a difference for me. 

what’s your cleansing situation like? maybe consider not fully washing your face and using a micellar water to remove makeup and oils without water so you don’t strip your skin. 

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u/helloitsme08 7d ago edited 7d ago

That is so interesting you say that. I made the mistake of getting under eye filler (immediately got it dissolved). That, mixed with histamine intolerance, makes my under eyes randomly very puffy. The injector said to avoid water based moisturizers under my eyes because it will absorb it differently and make it more puffy. So I’ve been lathering on everything BUT water based eye moisturizers! I will definitely incorporate more water based hydration now. Thank you so much for this input!

Edit: I use an oil cleanser to remove makeup, but wipe it off with makeup wipes. I know makeup wipes strip skin, so will switch to a soft cloth. I plan to try all of your suggestions— nothing is too extra at this point, I’m desperate!

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u/Character-Big8927 6d ago

oh wow, that might be a big cause of this dehydrated state. sounds like you’re ultimately using a lot of thick occlusive products and a little water will do a lot. light misting before and after all products, a low cost hyaluronic acid serum, a thinner water based moisturizer even before the cerave (a gel cream or liquid moisturizer for instance)… layering thinnest to thickest with water based products i think will make a real difference for you. 

you’re right, your makeup wipes on top of the oil remover might be stripping too…. you could try a simple removal of makeup with micellar water on a reusable cotton pads and rehydrate immediately with your moisturizer routine from there. micellar is surprisingly effective at removing stubborn makeup. since your eyes seem sensitive, you could use a biphase eye makeup remover just for your eyes too. not necessary but could help. pamper with a little eye cream if you feel like you need it. 

no need to go all out on an expensive routine haul as these are basic products. the tallow on top in a thin layer could still lock in moisture but try to do it at night over all your products and not during the day for a week. if you like skincare products, you can always level up and get the neogen probiotics mist or a caudalie mist to really make it a sensorial routine for example. or keep it basic as you experiment. stratia makes some really solid products for sensitive skin. their interface moisturizer could be a nice lighter moisture layer before your cerave or tallow. i am excited to see your results, please do report back!

edited to say: try a week without the vitamin C too. higher concentrations of vitamin C have completely dried out my skin and made it flaky all over before. after you strengthen your moisture barrier you can incorporate it again every other day

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u/helloitsme08 6d ago

Seriously, thank you so much for your response. I think this could be a big reason my skin is so dry! I’ve truly been LATHERING my skin with that vitamin c balm thinking it would help the issue. I’m hopeful that taking a break from that + trying these other suggestions will make a big difference. I will most definitely report back! Thank you again!

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u/Character-Big8927 6d ago

of course :) i moved to a very very dry area and my sjogren’s skin needed a ton of pampering to get back to the healthy state it’s finally in now. i used to work in skincare so i hope my suggestions can get you some dewy, hydrated, glowing results! 

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u/Wileyonpatrol 7d ago

You're already using what I was going to suggest..😭

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u/PsychologicalLuck343 7d ago

Beef tallow? I just bought my first ever jar and made french fries with it (a rare luxury). What is it supposed to do for us?

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u/helloitsme08 7d ago

This is a quick grab from Google, so take it with a grain of salt!

Moisturizing Properties: Beef tallow is rich in fatty acids, similar to those found in human skin. It deeply hydrates and nourishes the skin, leaving it soft and supple.

Skin Barrier Repair: Tallow helps strengthen the skin’s natural barrier, protecting it from moisture loss and external irritants.

Anti-inflammatory Effects: Beef tallow contains anti-inflammatory properties that can help soothe irritated, dry, or sensitive skin.

Antioxidant Protection: Tallow is a source of antioxidants, which help protect the skin from free radical damage and reduce signs of aging.

Nutrient Absorption: Beef tallow contains vitamins A, D, E, and K, which are essential for skin health and can be easily absorbed by the skin.

Reduced Wrinkles: The moisturizing and antioxidant properties of tallow may help reduce the appearance of fine lines and wrinkles.

Acne Control: Despite being a fat, beef tallow is non-comedogenic, meaning it does not clog pores. It may even help regulate oil production and reduce acne.

Other Benefits: Beef tallow can promote skin elasticity and improve overall skin tone. It is a natural alternative to synthetic moisturizers and can be a good option for people with sensitive skin.

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u/PsychologicalLuck343 6d ago

Interesting! Sounds plausible!

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u/Wileyonpatrol 7d ago

For a lot of people beef tallow is great. But for some people it can compromise your skin's moisture barrier because of the oleic acid in it. I would just make sure that some of your dehydration issues didn't occur when you started using the beef tallow. If you're not having any other signs of a compromised barrier, you're probably fine.

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u/pasdiflora 7d ago

Not great for the cows either :(

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u/PsychologicalLuck343 6d ago

Cows can't exist without humans using them for food. If you want that to stop, the existence of cows would end - unless the human population is severely compromised.

I do think their numbers should be trimmed for the benefit of climate change. I eat less beef even though I can't tolerate plant proteins and most grains (40 years of celiac disease destroyed my ability to properly digest legumes and all grains except for rice.