Ok, so dry eyes and mouth are obvious to me. However, how do you tell in you have internal organ involvement? I know for some it does not progress to this, but if it does, how would one know? thanks
A few yrs ago, I was admitted to the hospital with what I thought was a really bad flu that would not go away. The bloodwork was abnormal and the drs had no clue what was wrong with me so they ordered more blood tests and scans. This is how I found out my sjs was affecting my internal organs.
After high doses of steroids prescribed, my numbers fell back into the normal ranges. I was placed on Plaquenil after I got out of the hospital and I am still taking it. Fortunately, since then I have been ok and my bloodwork is still in the normal ranges.
Sometimes by symptoms - e.g., chronic cough and shortness of breath can signal lung involvement, but often, there are no signs of organ involvement which is why it's so important to get regular blood work to check liver and kidney function. Any cough, shortness of breath, chest pain should be followed up with a CT scan.
Gardenlover, I am so pleased that you posted this question. I have sometimes thought 'How would I know if '... so I eagerly look forward to reading more replies, I am definitely taking onboard what Sadie and mshistory have already said, thank you.
My organ involvement was found through blood tests. No symptoms really to give it away, just investigating for GI probs or incidental findings on routine bloods.
My main problem has been transaminitis of my liver.
i haven't had organ involvment- hope i never do , but my mother has a marker in her bloodwork called alkalizing phosphatase signalling her liver was stressed for a few years at a low level.
Suddenly she became intensely itchy, had horrible indigestion and was quickly diagnosed with stage four liver failure ( primary biliary cirrhosis)
As the others have said, the regular lab work is how the doctors monitor for it, along with signs and symptoms you might mention but many times you might not have obvious signs and smptoms. I was having ankle swelling and my kidney function was off in my bloodwork, luckily once I stopped taking my Lodine (NSAID), it the swelling and bloodwork slowly improved it is now normal again. I take tramadol for pain when I need it and am on Plaquenil for the inflammation.
Nancy
I got exertional shortness of breath last year...I thought I was out of shape. I had stopped exercising but was quite active at work. I started noticing that I would get easily winded doing things. HMMM. Then 2 months later my co-workers started to notice. I thought well maybe I have reflux so we treated that. Nope. No better. Then the dry cough came. By the summer I am worse, seeing pulmonologist. No answers, increasing steroids. changing immunosuppressants in Nov. Now I am much, much worse...unable to do most things because of some kind of pulmonary inflammation. failed another immunosuppressant therapy and waiting to see what to do next.
I say all of this to you guys as a warning.... do not wait if you get symptoms. Get them checked out. It may be nothing or it may be something , either way, please don't wait around. OK? Take care. CK
This has been mentioned before with gastro symptoms and sorry to say it but so often nothing is found. I've had a bad gut since 2006, barium ct scans, you name it and nothing ever "showed" up. Of course back then did not have a Sjogren's dx...but even now with this current round of Gastro heck, my beloved gastroenterologist isn't necessarily buying Sjogren's as a cause. Maybe the lung involvement issue would be more easily dx'd. Even when I was a mess asking WHY ARE MY TEETH CRUMBLING AND ROTTING....no one responded with much more than a shrug..."maybe you should floss more".
I had an appendectomy in 2004, operation delayed by about 2 hours because the ultrasound didn't show an appendix....the tech and doc both asked "are you sure you didn't have it removed?" >:( Finally the surgeon said "let's do this"and by George! found one all right, and it was gangrenous and about to rupture. Stay tuned for my next chapter called "The Weird Medical Files of a Deranged Sjoggie"
;D