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Sjoren's syndrome

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#1 Exhaustedbuthappy

Posted 05 February 2013 - 11:53 AM

so, after having a number of really scary blood test results, we are looking at a diagnosis of Sjogren's syndrome.

I need to have more blood work done as well as lung function tests, a cardiac echo and a CT scan of my chest and pelvis.

I personally don't think I have it, but then I'm not a physician!

I'd really like to hear from anyone else who has been diagnosed with this.

thanks so much.

Edited by Exhaustedbuthappy, 05 February 2013 - 12:01 PM.

#2 TwiceThe Woman

Posted 05 February 2013 - 12:03 PM

Check out Venus Williams website.  
She was diagnosed with Sjogren's Syndrome.

#3 elizabethany

Posted 05 February 2013 - 12:09 PM

I am in the process of diagnosis, currently waiting on my final specialist appointment.  Chances are good, and it is in my family.  I also have a number of other autoimmune problems.

There is no direct treatment past treating the symptoms, such as eye drops and moisturiser.

#4 mandala

Posted 05 February 2013 - 01:22 PM

I don't have Sjorgren's, but I have SLE.

The thing about a lot of the autoimmune conditions is that they can be a bit unclear. It's not uncommon to have something that looks a bit like a couple of different conditions, and it can take a while to work out which of them it is.

Then, when you get a diagnosis, you tend to find that the treatments address symptoms (e.g. anti-inflammatories, artificial tears) or try to suppress the overactive parts of the immune system (e.g. steroids). I kind of wonder why they bother distinguishing when the treatments are pretty similar whatever you have!

I hope that you get some answers and feel better soon.

#5 Mumof2Pink

Posted 07 February 2013 - 05:59 PM

HI, I have Sjogrens and SLE.  My Sjogrens affects my salivery glands and my tear production.  I have a really dry mouth and have tried the artifical saliva sprays (gross) but nothing really seems to improve it.  The worst for me is at night and I constantly wake up with a dry mouth and have to have a sip of water. My eyes are always dry and gritty feeling so I use artificial tears regularly during the day. Again night time is the worst and I sometimes have to use the drops at night as well.  I am on plaquenil tablets twice daily but I also don't feel these are doing much to help.  

I have mild kidney, heart and lung problems but these are probably associated with my SLE, as is the arthritis Ive just started developing in my hands.  I have had short courses of cortisone as well but this also hasn't made much difference.  I was diagnosed in my late 20's when it was picked up during tests for infertility but I've really only had significant symptoms for the last 3-5yrs.  I'm seeing my specialist in a couple of weeks and will probably need to go onto stronger medication but I'm not sure what one.

If you have any questions, please feel free to PM me.

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