SJOGRENS SYDROME

[annlister]

Having been diagnosed with Lupus many years ago now, at 61 they tell me after some tests etc that I have also got Sjogrens syndrome. I knew i had some other mixed connective tissue diseases overlapping the lupus and is seems they are evolving as I get older.

[katerowley]

i was diagnosed with lupus 19 years ago, but i had the tests ( i presume the ones you mean are the paper in the eye ones) that is to determine if you still have lupus, the higher you score it remains lupus, the lower the number you have sjogens syndrome.

im recovering from skin cancer now, unsure how i got it as im light sensitive and its the worst i have felt in 19 years.

[Lupylass]

Hi annlister

I have lupus and Sjogren's. Have you been given anything specifically for the Sjogren's, depending on your symptoms? I use carmellose eye drops during the day and lacrilube at night. I also moisturise my dry skin, and use nozoil for dry nostrils. Medication wise I am treated with hydroxychloriquine sulphate to control both conditions.

Take care.

[annlister in reply to Lupylass]

Exactly the same ! I find though I am so weary and tired

[Maureenpearl]

Hi

With lupus we have a lot of other conditions that other people have on their own.

I also have Sjogren's syndrome, for which I use Viscotears liquid gel during the day and night I use Lacrilube along with the Viscotears.

I asked my GP for four tubes of each for the month as my eyes are very dry and I am in agony if I do not use the gels regularly.

Hope this helps

xx

[annlister in reply to Maureenpearl]

Thanks so much

[Hidden]

Maintaining eye health is so very important. One overlooked eye drier is weather. In those susceptible, Sjogren's patients for example, a slight breeze can be very eye dehydrating. Best to prevent protect your eyes by wearing sunglasses, tinted lenses, glasses. Most Optha's recommend wrap around frames for patients with Sjorgren's.

[goldengirl101]

I too have Lupus dx 14 yrs ago, & I also have Sjogrens syndrome. A short while ago I was dx with RA. Before I was dx with Lupus I had 2 major strokes! 6 mths after I was dx with Lupus & they found I had APS which had probably caused my strokes. Luckily I was put on Warfarin tabs for life & I have to have my INR levels quite high.But with the Sjogrens I find that my mouth is the one I suffer from badly. My tongue in particular is awful ... the pain can be terrible with the constant dryness. I have to carry a bottle of water round with me all the time & chew sugar free gum! Then to make matters worse I have a blocked salivary gland so I don't hardly produce any salivar from it! I have artificial salivar spray which I carry with me all the time! I do use viscose tears for my eyes which seem to help a bit. I'm on the usual medication for Lupus & the rest Plus lots of other medications! I understand what you say about getting one thing after another as you get older .... that has happened to me too!

Take care of yourself. xxx

[annlister in reply to goldengirl101]

Yes I also use a tongue scraper as my tongue is coated in the morning and that leads to sore throats and I gargle with cooled boiled water and sea salt

[chrisj]

Me too with Sjogrens, diagnosed about 2 years ago after a mouth biopsy and SLE was diagnosed in 2005, I'm 65. Also on plaquenil and I use prescribed mouth wash and toothpaste regularly....I have artificial saliva pastilles and sprays that I dont use much..all on prescription. I buy sugar free mints, namely polos, sugar free gum at times and I find fruit is good, both tinned and fresh, cucumber as well..I've grown to love salads....lol...make the best of what there is, it all helps. The dentist sorted out a script for Difflam as well, its an antiseptic and its really good for mouth sores, I'd recommend it.

I understand where you're coming from re getting older annlister, I feel the same at times xxx

[lupie-Cathy]

I was diagnosed with Sjogrens around 16 yrs ago and SLE about 3years ago, I also have osteoarthritis and an under active thyroid along with various other problems. I can't use the artificial saliva spray as I find it much too sweet, I just drink hot water I find it quenches my thirst much better than any other drink, although I had some homemade lemonade at a cafe yesterday and it was lovely as quite tart and actually made my mouth water a little! I use Carmelose eyedrops and gel tears at night, I've been having a lot of trouble with a dry nose at night waking in the morning with crusts and bleeding at the bridge inside my nose but have found that a hayfever steroid spray is helping at night just before I go to sleep. I was told that I have mild SLE but like you I find that as I get older more and more niggly bits are happening! Managed to trap a nerve in my shoulder a couple of days ago not sure how but sure was painful.!

[annlister in reply to lupie-Cathy]

Hope your shoulder heals