Does anyone have a solution for blistering around the lips bc of sjog

Hey There! My husband's lips always blister from the sun and he gets the cold sores. This happens even with sun screened lip balm. I know this is different than yours, but, Abreva heals his lips. It's expensive for a little tube, but, it will clear the blistery cold sores up in no time. This is over the counter. Talk to your doctor please first.

Have you been tested for contact allergies? Some of the very things you are trying for your lips could be making them worse.

I had exfoliative cheilitis with occasional cold-sore-like lesions (not herpes simplex, I was tested for that) for years, from early 2019 to 2023. Finally, a dermatologist did skin patch testing on me and I have contact allergies to: Paraben Mix, Phenylmercuric Acetate, Sodium-2-pyridinethiol-1-oxide, Methylisothiazolinone+Methylchloroisothiazolinone,
Oleamidopropyl Dimethylamine, Propylene Glycol, Amidoamine, Benzoylperoxide, Methylisothiazolinone, Toluenesulfonamide Formaldehyde Resin, Glyceryl Monothioglycolate, 2-Tert-Butyl-4-Methoxyphenol, Fragrance Mix 1, & 2-Bromo-2-nitropropane-1, 3-diol.

If you are thinking "That's a lot.", it is. It is also why nothing I was doing was working. Parabens, propylene glycol, fragrance, BHT (toluene product) and methylisothiazolinone are in EVERYTHING!!! Soaps commonly have the methylisothiazolinone. My hands are still constantly cracked from washing without the soap I use at home. It's obnoxious. Even the cortisone and Benadryl topicals you may be trying likely have propylene glycol, if they aren't a sticky ointment. The creams are bad.

It is a ton of research to find appropriate products that do not contain my allergens. I'm female. I like looking vaguely female. So personal care products are not something I'm giving up.

But using products without just the allergens I know about... There could be more! I can't do Dr. Bronner's peppermint lip balm, for example. But I can do Dr. Bronner's light blue tube, which is unscented. Anyway, I no longer have exfoliative cheilitis.

I highly recommend getting the testing, though it is a 5-day, PITA process.

Not sure if you’d call mine blistering but they have been peeling burning some swelling with tiny red blood spots on them like Raynards red spots… this has been happening every day for almost two years now ! No dermatologist has been able to help. Gone to four! The only thing I have been able to use now this last year is medicine Vaseline. Applied every hour and they still peel daily. I’m so bothered by hard tags of skin, dryness redness sometimes pain ! I have Sjogrens Raynards and scleroderma. No one has ever named the cause. Except for extreme dryness. Need help so tired of this. The every hour of pure vaseline helps but it’s still happening.

I don't have Sjogrens in my plethora of afflictions, but am sensitive to a lot of chemicals. I can use lip balms/moisturizers for a while, but then get a rash around my lips. The only thing that doesn't cause a rash is Vaseline or other pure white petroleum jelly. It does not moisturize, but forms a seal so lips don't get as dry. Coconut oil may work as well.

@emred Welcome to Mayo Clinic Connect. The last two times I did a course of topical fluorouracil on my face to address topical skin cancers, I had a severe reaction on my lips. For me, it is what they call "farmers' lips" and can lead to skin cancers. My dermatologist suggested a cortisone cream mixed with a rich Vitamin E cream to be used on my lips, to help them heal. Could you give this a try and let me know if it works for you?
Ginger

Valtrex 1 gram daily
During flare ups Valtrex 1 gram twice a day.

Every day have ver dry skin tags hanging on my lips rough to the feel. I’ve used many suggested products and none have helped my doctor said to use medical Vaseline every hour and I still have them it’s helping some but if I forget it’s right back. I hate it. Have to moisten a wet soft cloth and rub the dry flaking skin tags of. For this reason I also wear a mask.

Hi there. It’s a script but get it for Acyqlovir 200 mg. The second that you feel anything take it and in my case it stops it in it’s tracks. Good luck.

Maybe your lips will respond to these OTC meds. But blisters are their own breed of cat. In my case they are shingles trying to break out. Lots of people don’t know what’s going on behind the scene with these many Autoimmune diseases. Mine is from the meds I take for RA Lupus and Sjogrens. Sunlight etc can be a trigger which is something I’ve learned in my trips down this fight against insanity of treatment for my diseases. Good luck and many prayers. Happy luck with dirt cheap Acyclovir. 🤩🙏

I have Sjogrens, I have dry lips, purple spot on my bottom lip that has been there for a few years . I’ve asked before about Burning Ear Syndrome my PCP, Neurologist, ENT, Urologist, Dentist, Pain management, had never heard of it and even said there wasn’t a code for it. Finally I asked Rheumatologist and she said if it’s the whole ear it’s from Sjogrens and mine might be one ear or the other and occasionally both. So something else to add to my oddball list