Sjogren's Syndrome Support Group

Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.

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venicetomorrow 11/18/2015

I was diagnosed with SS about 7 years ago and Lupus last year. I have taken plaquenil for a year. Since August, issues with dryness have increased SO much. I have found stuff that works for my eyes and mouth, but my lips and vaginal dryness have gotten pretty extreme. My lips grow scales and it is hard to smile. I have tried all natural lip balms, I gently exfoliate every morning and night, but it is still brutal all day long. It stings to eat. What on earth can I put on my lips that will help? Any over night remedies? I can only imagine it getting worse as Winter arrives.

I have the same issues with my lady parts - so much so that I bleed because the skin cracks. I am going to try over the counter Replens - any good results with that? Any other suggestions?

Thanks everybody!!

vetteme4 11/20/2015

I was thinking of getting Replens also. I use Blistex ointment for my lips. I keep it with me all the time. I have tubes beside the bed and on the end tables in the living room. Also one in the kitchen. It helps with me. it might for you. My dryness is not that bad yet. Best of luck to you.
Gentle Hugs,
Wendy

Abotsd 11/21/2015

I use A&D ointment on my lips, and sometimes, eyes. My lips have stopped peeling, most days. It's very rich in lanolin. I used it for my babies' diaper area for years. 4 babies. Made my hands so soft.

For my vagina, I use a hormone cream that my Urologist prescribes, Estrace. Twice a week. It keeps me comfortable. Stops itching, too.

Wishing you good luck, this is not a comfortable illness, at all. I also chew bubble gum all day long. Too dry to talk otherwise.

luna1212 12/13/2015

Have you tried taking omega 3 oils and changing your diet ? The oil helps lubricate the mucous membranes. I drink a lot of water but its the oils that help moisturize . I eliminated a lot of things from my diet and that helps a bit. I use a humidfier at night and as for vaginal dryness ask your dr if you could use Vitamin E oil. I really hope you start to see some improvement. I understand your discomfort.

cowgirl918 12/14/2015

I take Fish Oil daily. Use Simply Saline morning and night for nasal passages. Doctor instructed me to sleep with humidifier near bed which I do. Lip balm a few times a day but always before bed. The lip balm captures moisture from humidifier. I carry Hall's Cough Drops in my purse as well as gum. Always have bottle of vitamin water with me.
Female issues can be greatly improved by OB/Gyn so I would ask your doctor. OTC aids such as Biotene help but Glycerin swabs are the best when mouth is really dry.
Good luck.

Sunvalleygal 12/24/2015

The biologic I take helps keep my vision clear / Humira and plaquenil / and I drink water constantly... like all day.... it seems.
I drink decaf coffee to keep more hydrated and I eat a lot of fresh veggies and fruits. Caffeine will dehydrate the body.
I drink decaf tea as well. I use balm inside my nose at night and use lip balm most of the day.
My skin is terribly dry. I started making my own lotion a few years ago and now nothing but it works bc it is so moisturizing and helps the moisture stay in.... I use a recipe of Vaseline, lotion, and vitamin E lotion.... blend it up in the blender... it's a little greasy... but my skin requires it.
I also cannot take hot showers or baths daily bc it is so hard on my skin.
Hope that helps.

WarriorGal 01/07/2016

Evoxac is an RX for dry mouth that helps my dry lips.

hillaryd 01/13/2016

I second the Evoxac. It makes you salivate. Just don't take at bedtime, or you'll wake up in a pool of saliva on your pillow!

WarriorGal 03/02/2016

Have you seen a GYN?

angee7 03/24/2016

Just saw my Gyno today, and she recommended coconut oil for vaginal dryness. She said it's all natural, and won't hurt you.
I'm thinking about trying it (i'm desperate). The Doc did say, you have to really get it up there.

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