What do you use for Sjogrens dry, peeling lips? I have had lupus for 30 years, and a variety of dry eye and salivary gland issues, that have at times been severe. Been treated for both. Also have dry sinus, and sleep apnea. Even if I use items to prevent mouth breathing during sleeps, lips still bad.
When I went searching for an answer about my dry lips, sjogren's never occurred to me. I went to the dermatologist, and it didn't occur to them either, so they ended up giving me very painful laser treatments to my lip twice, to try to clear up the dry skin, thinking it was some type of precancerous condition (cheilitis). This did very little to change my problem at all.
I recently changed my diet, due to inflammatory arthritis, and this made a slight improvement in my lip issue, but overall it is still dry and flaking. The skin will become hard and peel off or crack, like scales almost, or plaques. It's very painful when the skin tears. I have found that most big market lip products and makeup products make it much worse. I cannot tolerate mineral oil or lanolin, jojoba, petroleum, coconut, macadamia, or anything else that is harsh on the lips. Many natural oils seem great, but are not compatible with use on the skin, they just sit on top and don't truly moisturize.
Today I was doing some research, and discover that a combination of vitamin E oil and Castor Oil is helpful. I just ordered a range of different products, including lip balms and lip glosses, with these ingredients. I may also make my own mixture of vitamin E oil and Castor oil, and just put it in a lip gloss roll-on bottle, for night time.
Found all items I was searching for, on ebay. Seems like foreign countries make better stuff for this purpose. Couldn't get from Amazon, due to shipping distance. I did read reviews and search for ingredients before ordering. I also try to keep my eye open for counterfeit products.
I was wondering if anyone else has any ideas about how to improve the problem? I know you aren't supposed to lick your lips, and I don't believe I am doing that so much.
I do have a habit of feeling my lip usually with my fingers, to find the dry places. I tend to pull off the dead skin, because I can't stand the feeling of it. Sometimes my lips feel like a torn-up battle zone.
On occasion, I have to use antibiotic ointment, because the condition of my lip and the fact that I am on immunosuppressive medication, can lead to bacterial growth.
I'm not out in the Sun much. I am very careful about the Sun because the medication I am on makes me very sensitive to the Sun.
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roxanne67
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Hi!I don't know if you can get Lush products where you are - but they could be an option for you . They use natural ingredients in all of their products - Lush lip service is really nice. They also have a lip balm that uses honey - and honey is used to heal wounds that are sometimes resistant to antiboitics!
Hope you feel better soon - having sore dry lips is no fun at all
Hi, I too have suffered from dry lips due to lupus and Sjogren's Syndrome to such an extent that I was getting blisters on the inside of my mouth. I discovered that you have to keep your lips them moist at all times. Do not let them dry out. I use vaseline or a chap stick such as Nivea or other brands of lip moisturizer. Experiment until you get one that suits you. There are now many on the market. The secret is to NOT LET THEM DRY OUT. That is very important. Keep one by your bed, carry one with you at all times and use it when necessary, I have been successful in conquering the problem. If you let them dry out they crack and blister. there are so many drinks, fruit and food that are acidic, try to avoid them if you can.
I am very sorry to hear of your condition. Have you tried high quality Manuka honey? Applied all the time in between food and drinks? I would say between using honey and Vitamin E oil (from capsule), it would help. Since it has been going on for so long, I think it wise to look for all natural things to deal with. Any sort of man made thing would give you extra trouble in the long run. I seems to me that you must stop your habit of touching your lips altogether. Hard but essential and also important not to touch your lips during pandemic. Peeling would not help either. Let it fall on its own. As for sleep apnea, I have come across an unusual product called IQuro which is a small piece you put in your mouth for exercise (daily three times for 30 seconds). Please look it up.
I have bought this for dysphasia issue that six years of daily physio therapy couldn't help and after a barely a month, it has made a huge difference. This piece also helps Sleep Apnea (according to its company). Hope you find a way to help your lips heal. Good wishes!
Hi Paprika60,I'm in the US but off and on have very dry skin on face, lips or inside nose. I use Mama's Bee magic. Organic and only Bee pollen and royal bee jelly, fruit oil and olive oil. I also suggest old fashioned steaming your face, promotes circulation, increase perspiration and dilated blood vessels. I steam my face then put Bee Magic off and on all day. If you like I can send pic of it but will have to start new conversation. Hope this helps and you get relief soon.
Hi Roxanne 67,I replied to you with another, sorry about that. Please see my response to Paprika60 😊 and to Paprika60 thank you for letting me know. Nice to meet you. Happy Saturday
I believe that the lip issue we have originates internally. This is why it gets better with dietary changes. So what you put on externally is only helping to heal the eruptions and loosen that thick, dead skin. I, too, pull it off because it eventually bleeds if you don't. I also use vitamin e, neutral oils and natural lip balms avoiding coconut, nut oils and citrus. I also eat a low acid diet and keep the humidity around 50 percent in our hoise. And I use a homeopathic remedy containing sodium phosphate (Nat Phos). It seems to bring relief within minutes. All help but lips continue to be problematic. Touching shouldn't affect anything. In fact, heat or other things that increase blood flow may help. Hope something helps. Look forward to when we understand these things better.
One thing that frustrates me, is that I go to all of these specialists at this big Award-winning hospital with all of these great achievements. I have always gotten to go to really good hospitals, because I live in a really big metropolitan area. But they never seem to understand the systemic issues that are coming from my autoimmune diseases. Of course, the 1st time around they didn't know I had an auto immune disease. I was suffering from inflammation in my body, and the lupus can do a lot of weird things to you because of it. I had two painful treatments to my cervix, for what they labeled as dysplasia, ten years apart. They literally blasted my cervix into oblivion, so much that the gynaecologist can't even find it anymore. Later, I was told that it was likely I just had lupus inflammation, mistaken for something else. Then I went to the dermatologist for answers to my lip issue, and they assumed it was again precancer and did those painful laser treatments to my lip. Even more painful was the long needles that they put into my face to numb the area with lidocaine, right on the nerves. So many times, I have had to figure out my own issues, and solve them myself.
Here's some other examples… I began having severe GI issues that were very bizarre. I wws having problems with loose stool all the time and losing weight, constant GI issues, and it got to the point where I had this spasm in my colon, where it would jump all the time like a baby was kicking. I tried everything you could think of to fix it and nothing worked. Finally, the doctor started doing all these tests on me, and they wanted to do a colonoscopy and they probably would have taken biopsies and put me through all that stuff. Thankfully, at the last minute I realised it was the calcium formula I was taking for my low calcium condition. It was so acidic that it was literally messing up my gut really badly. As soon as I switched to a different form of calcium, problems went away.
Then there waz the spasm I was having that was so severe in my abdomen. It was right above my kidney transplant scar, so I thought maybe I had a hernia or something. The hospital had taken out my parathyroid glands and forgotten all about me for 2 years, and left me in a hypocalcemic condition that was causing severe muscle cramps. It wasn't a hernia at all, but I went through all these tests and ultrasound and stuff, and they were like yeah you probably have some type of hernia, lol.
Then earlier last year, I started losing my hair like crazy. The doctors couldn't figure out why, and even went so far as to do a scalp biopsy. The hair loss was so bad, for months you would have thought I was on chemo. I probably lost about 35% of my hair, before I gave in and used minoxidil, which stopped it. Turned out to be post-covid hair loss. Alyssa Milano was really vocal about what happened to her, and that was when I finally realised it was the same thing happening to me, after I had Covid in January last year.
Sometimes things just are not what they seem, and it can take a lot of work to figure it out, and a lot of prayer. It can also be frustrating, because when you have a systemic disease like lupus, they often assume everything is caused by the lupus, and that can also confuse situations and leave things ignored, that really aren't lupus at all.
I have found that a lot of MD's don't even want to deal with my medical issues, they always want to farm me out to some specialists that takes 2 to 3 months to see for any problem.
I will look at the catalog. Mostly the pain shows up on the inside of my knee which is also stiff. But if you press anywhere on the nerve, it hurts a lot. Physical therapy helps a little. The best relief is a TENS unit that buzzes in electricity.
Wow, so many helpful suggestions from nice people who want to help! I have found a homeopathic remedy that I think helps that awful lip cracking (along with low inflammatory diet and many of the other helpful suggestions). Its called Natrum Phos. It is a single ingredient/cell salt. As I believe the cracking is from internal causes, an internal remedy is called for. You can often find Nat Phos at a Coop or online at 1-800homeopathy.com/. It is inexpensive.
I tried everything I could think of and nothing worked for more than a couple days. So I did more research and I came across this product. I have been using it not just at night but also during the day. It is thick enough to keep my lips moist without causing the peeling reaction that some products cause.
I found this lip sleeping mask, and it keeps my lips from drying out, like a sealing balm. I saw a similar product near the registers at Old Navy that looked good.
It doesn't cure it, but it sure helps, after trying SO many things in the past. The only other thing that has helped me was many years ago, I found something made by Boots, but then I couldn't find it again, I think it was discontinued.
Dark pink jar of lip mask, by LANEIGE brand, 20g size
I tried everything I could think of and nothing worked for more than a couple days. So I did more research and I came across this product. I have been using it not just at night but also during the day. It is thick enough to keep my lips moist without causing the peeling reaction that some products cause.
I found this lip sleeping mask, and it keeps my lips from drying out, like a sealing balm. I saw a similar product near the registers at Old Navy that looked good.
It doesn't cure it, but it sure helps, after trying SO many things in the past. The only other thing that has helped me was many years ago, I found something made by Boots, but then I couldn't find it again, I think it was discontinued.
Dark pink jar of lip mask, by LANEIGE brand, 20g size
I have dry, peeling lips and pick off the loose dry bits too. As with others you really need to keep them moisturised all the time to help. I'm lucky (sort of) that I can use petroleum, although try to avoid. Olive oil works well for me. I have just bought Vit E and will give that a try too. But everytime you think about it, moisturise, it really does help. Best of luck.
Indeed, I can never let them be unprotected. The moment I do, they begin to harden and crack and peel. I even stopped the dentist in the middle of dental work to grab some chapstick, because I could feel my lips getting very dry. I am at home a lot, and constantly grabbing for the lip mask. I really like the consistency, and the way it feels on my lips. Olive oil is nice, but wears off quickly for me.
Because of the cracking and peeling that does sometimes happen, and the fact that I am immune suppressed by transplant medication, I do have to sometimes also put antibiotic ointment on. I can tell the difference when I am getting a staph infection on my lips, which has happened. It makes my problem much worse, and my lip products stop working. The dermatologist cultured it, and said it was a rare form of staph. My body is basically open to all kinds of nasty creatures to take hold.
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Dry eyes, dry nose and fatigue but blood tests say not Sjogrens? 
Red dry skin patches with SS. 
Severely dry eyes and awful light sensitivity 
Does this sound like Sjorgens? I do NOT have dry eyes nor a dry mouth. Is that common? 
Neuropathy & treatments