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Hello,

I was just wondering if anyone else on this site also has Sjogrens Syndrome (autoimmune disease)??

Shawna

Hi Shawna. I don't have an official diagnosis of Sjogren's but I do have the symptoms and my rheumatologist agrees it's probably Sjogren's. I have systemic sclerosis (scleroderma), and my Raynaud's and Sjogren's are secondary to that. My regular doctor told me to chew sugarless gum with xylotol for the dry mouth, and my ophthalmologist recommended flax seed oil capsules for dry eyes. Both have helped.

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Judith
Secondary Raynaud's with underlying systemic sclerosis

Hi Shawna

I do have symptoms of Sjogren's along with lupus and Raynaud's. I wore contacts in high school and in my early twenties. After I was diagnosed with lupus my eye doctor would not prescribe contacts because of dry eyes. Even now with disposable contacts I can't get an eye doctor to prescribe them. The doctor says I am not a good candidate for contacts.

I have had trouble with eye irritation and infections in the past. I am on an immunosuppressive drug that has really helped with both.

Sarah

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Secondary Raynaud's with a connective tissue disease

Hey Shawna! I know it has been a while since you posted this. But, I have been diagnosed with several autoimmune diseases and I am 23 years old. One of these includes Sjogrens Syndrome and my doctor has me on a perscription called evoxac 30mg and it does help with the dry mouth quit a bit. Lets say this I can tell when I miss my meds. I take it every three to four hours. And, another plus is that I have not noticed any bad side affects from the perscription. I wish you luck but I think you should ask your Rhumatologist about it.

Hi. I was just wondering if you ever had problems at night with drooling while taking the exovac? My doctor prescribed it for me even though I don't feel I have a problem with dry mouth.

I have Raynaud's and dry mouth. Those are my only 2 symptoms. I have an ANA of 570. But, I tested negative for Sjogrens. I would love to know what's up with that!! I take pilocarpine for the day mouth. It helps, but is certainly not a cure. I have gloves and biotene gum with me everywhere I go! If you can't find the gum, ask your pharm. to order it for you.

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Twila

Hi Sunny! Thats funny that you ask. Yes, I do drool at night if I take the medicine right before bed. But, I realized that if I take it an hour or two before bed I don't noticed that much of a difference. But, I would rather drool then wake up with a terrrible dry mouth.

I also have not been officially diagnosed with Sjogren's but spent all last year being fitted with a grp contact lense due to the dryness in my eyes. But most the time they were so dry the contact just fell out. So I'm back to soft contacts and eye drops.
I use biotene mouth spray and toothpaste...which doesn't help much at all. I drink so much water it should be coming out my pores but never relieves the dryness in my mouth. I found believe it or not ice breakers makes a Sour berry candy (sugarless) that helps keep my mouth wet longer. It's hard to have any lengthy conversation with anyone because my mouth gets so dry I can't talk.
My Rheumy appt. is, thank goodness....coming up the end of this month. I'd like to say I have a mouthful for him, but not sure if that will hold true. tee hee

Yes, I was diagnosed w/Sjogren's and Raynaud's over 3 years ago. I am a 35 year old female. I have about every symptom listed that goes w/each.

I have recently been battling the cold hands and feet. My paternal grandmother has Lupus and my mother has been diagnosed with Lupus (and has Raynaud's) but thinks she has more symptoms of Sjogren's. I have not been diagnosed with either but have symptoms of both.

I wore gas permeable contact lenses when I was in high school and sometimes my eyes would become so dry I could just blink my contacts out. Now with the soft daily wear contacts I do a little better, but I still have to add moisture a lot.

I have a 24oz Contigo drink bottle and I drink one every 2 hours starting at 8am and have my last one at 10pm that's 192oz of water so you would think my mouth would always be moist right, (I would) but I still feel like I have a cotton mouth and if I talk for any length of time without drinking it starts to hurt!

I also have a mouth sore on the inside of my lower lip that won't go away permanently. It will go away and come back always in the same place. It is very frustrating!

I just wish I knew for sure what I had.

Oh and I am 38.

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Warmest wishes (pun intended )
MountainRose

Edited: 04/19/2012 at 10:54 AM by MountainRose

Good morning,

My name is Kimberly Hammond. I am the CEO of www.Healthy-Chick.com, am 37 years of age, and am in desperate need of some answers.

About 7 years ago, I started noticing that my fingers and toes would turn "half white" (and sometimes blue), numb and would burn/sting when in very cold temperatures. I used to attribute this to getting borderline frostbite, then it started happening when in high stress situations. It wasn't until about 4 years ago, a friend of mine said, "Oh- you have Raynaud's Syndrome!" I had NO idea there was a term for what I was experiencing- and was quite relieved!

A few years ago, I started experiencing lower back pain, fatigue, memory loss, etc. I attributed that to stress... but did try and see my doctor for it all. She scheduled me for 16 MRI's. Yes. 16. Nothing abnormal, except a cyst at the base of my tongue (which has since enlarged. I can feel it when I roll my head, swallow, etc). I saw a number of other doctors after- including a Rheumatoid Arthritis specialist...and- still- I left with a positive ANA.... but still without answers.

I have had dry eyes over the last few years, as well, and have been living every single day with pain-- just learning to do so-- but my condition is getting worse. I am having joint pain- shoulders and hips, especially my left, and my range of motion is decreasing- though I teach yoga/yoga fusion classes and am active on a daily basis. Most poses are now done along with pain. Twisting postures, hip openers, etc. especially.

I am desperate for answers and do not know what to do.

Hi Shawna ~ I have Lupus..Sjogrens...and Raynauld's. I had to have my lower eye ducts cauterized closed this summer my eyes were so dry and it was beginning to effect my sight even with my bi-focal glasses. Most people though can use a silicone eye plug and that will work for them...I am alergic to the silicone so this was my only option. It has helped...I also use Restasis eye drops 2x's a day to help produce the good moisture for my eyes.
Right now my Raynauld's has been relentless and I think it's time to go into my rhuemaologist again. My nails are brittle and break down deep and the bumpy ridges across them are pronounced. But the most uncomfortable part is that I cannot get my hands to warm up...right now I'm typing with light weight gloves on.