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Sjogren's Syndrome
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Posted 5/30/2012 4:36 PM (GMT 0)

Hello – I’ve not posted here before, but have been on the Ulcerative Colitis board for many years.  I’ve been reading on this one and a few others for some time trying to get a better handle on possibilities for what’s going on with me.  I seem to have many of the symptoms of this condition, and have been tracking them for about six years (dry eyes, extremely dry sinus with nosebleeds, always thirsty, dry/tingly lips, throat has been raw since October, cold & tingly hands/feet).  I have worsening asthma symptoms the last two years, and have had pneumonia three times in 26 months.  The docs have tried to tie my asthma triggers to possible allergies and/or acid reflux; however, I do not have symptoms of these.  They are treating me with meds for them, just in case.  I had to stop my nasal spray (still on Zyrtech) because my nosebleeds got so much worse (obviously).

I may mention my thoughts on the possible Sjorgen’s to my doctor when I go in for my physical tomorrow.  The only reason I hesitate is that I’ve been on an immune suppressant for my Ulcerative Colitis for about a year, and my dryness symptoms have actually gotten worse.  If Sjorgren’s is caused by an overactive immune system, shouldn’t this drug also help with this?  Any input is appreciated.

Posted 5/30/2012 8:39 PM (GMT 0)

gac62 said...
If Sjorgren’s is caused by an overactive immune system, shouldn’t this drug also help with this?

Possibly, but I don't think all immunosuppressants work with all auto-immune diseases. For instance, with Lupus some people find Imuran to work, others get no response and find Cellcept to work, others get no response to Cellcept but Imuran helps...

You should definitely mention this to your Dr, but an ophthalmologist can test the eyes & diagnose, or (better option) you should see a rhuemotologist for a more accurate diagnosis and treatment plan. (You can get an ANA test from almost any Dr which would help determine if you need a Rheumy or not.)

Some Drs want to diagnose based on a lip biopsy. Several people on this forum have had that done, and I don't think anyone was pleased with the results. The sample they take is as large as a pencil eraser, and often causes nerve damage when they do it. I would recommend seeing a rhuemy & getting a dx based on symptoms and bloodwork rather then biopsy.

Let us know if you have more questions!
Posted 7/3/2012 2:22 PM (GMT 0)
I am new to the forum. Was diagnosed about 15 years ago. Look forward to getting to k ow everyoneM
Posted 7/5/2012 5:16 PM (GMT 0)
Update - I did discuss this with my doc and she agreed it sounds likely.  Did initial bloodwork, etc., and all negative.  She said there are more tests, but insurance most likely will not cover it.  At this time, I'm not pusuing it as the treatment seems like it would be the same as what I'm already doing - eye drops, ointment, nasal gels, etc.  I have to go back and see her in November for a diabetes follow up, so will discuss it more at that time.

Comment/Question for anyone - it seems to me that my very dry eyes/nasal passages and sinus are what is causing my body to react by creating the mucous as a defense.  I've been having more sinus drainage than ever - but I really don't think it's related to potential allergy or acid reflux.  Does anyone else have the mucous/sore throat issue but not allergy related?

Posted 7/6/2012 9:27 PM (GMT 0)
Hi. I am new to this forum. I have Sjogren's and fibro. I am looking forward to talking with everyone and sharing information. :-)
Posted 7/6/2012 10:26 PM (GMT 0)
Welcome, everyone!
Posted 7/10/2012 8:55 PM (GMT 0)
Have you ever had a biopsy for Celiac Sprue. You don't have to have the classic diarrhea. Some people get dry eye and the same symptoms as Sjorgrens. It is not uncommon to have both. You can try going gluten and dairy free for a month and see how you feel. If you are going to have a biopsy you have to have been eating gluten or you will get a false negative. Check the web and do some research and then check with your doctor.
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