Guest guest Posted July 25, 2001 Report Share Posted July 25, 2001 Hi all, just finished looking up several SS sites and imagine my shock, horror, when I realized that I probably do have this, as a side dish to the Scleroderma..My parotid glands are swollen, I have been having problems with my eyes, intermittently and when I tell my Rheumy about the dry mouth, which I have for the last 2 months, she looks and says she does not see anything. The picture on the site looked like the sides of my face..my Internist gave me antibiotic ear drops yesterday..now what? guess I will call the Rheumy Thurs since it appears to me I have the SS? does anyone know is there treatments for this that work? is it systemic? From the sites, it seems that it can be if left long enough...Thanks all, DEBB Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2001 Report Share Posted July 25, 2001 Hi Debb, Sjogrens usually improves with time on the antibiotics, along with the other scleroderma symptoms. People tell me that lubricating eye drops help. One would think that a rheumatologist would know that Sjogrens is a common accompaniment to scleroderma... Chris. >Hi all, just finished looking up several SS sites and imagine my shock, ><BR>horror, when I realized that I probably do have this, as a side dish to the ><BR>Scleroderma..My parotid glands are swollen, I have been having problems with ><BR>my eyes, intermittently and when I tell my Rheumy about the dry mouth, which ><BR>I have for the last 2 months, she looks and says she does not see anything. ><BR>The picture on the site looked like the sides of my face..my Internist gave ><BR>me antibiotic ear drops yesterday..now what? guess I will call the Rheumy ><BR>Thurs since it appears to me I have the SS? does anyone know is there ><BR>treatments for this that work? is it systemic? From the sites, it seems that ><BR>it can be if left long enough...Thanks all, DEBB </FONT> > ><br> ><tt> >To unsubscribe, email: rheumatic-unsubscribeegroups<BR> ></tt> ><br> > ><br> ><tt> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2001 Report Share Posted July 25, 2001 Hi Debb - Don't be shocked and horrified. I don't think the Sjogren's showing up means that your scleroderma has gotten worse. Remember scleroderma runs a different course in each one of us....which is why it's such a difficult disease to diagnose. Perhaps you overlooked the Sjogren's symptoms in your concern for the other things happening to your body. Just keep on with the AP.....it will work for the Sjogren's also. You can use moisturizing drops for the dry eyes.....be sure to get the kind that is preservative free. Sometimes the preservative will irritate. For the dry mouth drink lots of water. Be especially careful of your teeth. The lack of saliva leads to cavities. Brush lots!!! I wish I had known I had Sjogren's in time.....Didn't know what was making my mouth so dry. But I ended up with dentures...this before I even was diagnosed. When eating you should really chew your food a lot. It is saliva that starts the digestive process and if you have decreased saliva the extra chewing will help. Might want to consider digestive enzymes. You may also have very dry skin - use lots of moisturizers. Put the cream on while you are still wet from the shower. More effective that way. Don't know if you are married or not...but I had problems with painful marital relations because of vaginal dryness. Using a lot of lubrication is helpful. Your rheumatologist can do a simple test that will confirm the Sjogren's. They use a special paper and test your eyes for moisture. (Sorry, I'm skipping around -) Back to the dry mouth - sucking hard candies will help - be sure to use sugar free because of the increased cavity risk. I found since I didn't "make tears" anymore it was real easy to keep my emotions in check - so I was called upon by my family to do the hard things like read a poem at a funeral. With no tears spilling over you just don't break down. Now it feels really good to feel the tears well up when watching a touching movie!! Hope these practical hints might be of some help to you. Just don't get all stressed out over adding a new name to your diagnosis. Love, Judy rheumatic Sjorgrens Syndrome Hi all, just finished looking up several SS sites and imagine my shock, horror, when I realized that I probably do have this, as a side dish to the Scleroderma..My parotid glands are swollen, I have been having problems with my eyes, intermittently and when I tell my Rheumy about the dry mouth, which I have for the last 2 months, she looks and says she does not see anything. The picture on the site looked like the sides of my face..my Internist gave me antibiotic ear drops yesterday..now what? guess I will call the Rheumy Thurs since it appears to me I have the SS? does anyone know is there treatments for this that work? is it systemic? From the sites, it seems that it can be if left long enough...Thanks all, DEBB To unsubscribe, email: rheumatic-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2001 Report Share Posted July 26, 2001 Hi Debb, I found out a few weeks ago that I have Snorgrens too, so it seems it goes with the territory. My eyes don't bother me a lot, just gritty some time, but rarely. I am on Minocin 50 mg a day and have recovered 90% of my energy level, just stiff in the hands and feet cuz I'm not on any anti inflams yet. Yesterday I trimmed trees, cut grass, planted flowers, sprayed roses, trimmed bushes and staked a tree, and wasn't tired, just stiff. Try not to worry about it. All the best, Bev SD, SS, Reynauds Quote Link to comment Share on other sites More sharing options...
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