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Kmad3412, Board Certified Ophthalmologist
Category: Eye
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Experience:  Ophthalmologist with fellowship training in the areas of oculoplastic surgery and neuro-ophthalmology.
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Im a 50-year old female. In 2004, I was diagnosed with Sjogrens

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I’m a 50-year old female. In 2004, I was diagnosed with Sjogren’s Syndrome (primary) with rheumatoid arthritis (secondary). I went to various doctors and was prescribed an overwhelming amount of medication including steroids and quinine. Although I feel like I have the flu most of the time, tired and achy, I am used to this, in that I went undiagnosed for decades. The medication that they had me on was driving me mad (especially the steroids), so I stopped taking all of it. I have my good and bad days and have tailored work and home around to fit my needs.
Since Sjogren’s is so under-researched, I can’t get a straight answer as to whether I am causing my body harm by not seeking treatment. It seems to me that the Syndrome is mostly bothersome, i.e. dry eyes and mouth, body aches, and feeling crappy all the time. I sure the arthritis plays a part in my low energy and I my fingers and knees are beginning to “gnarl up.” However, I seldom experience pain in excess of 4 on a scale of 10 and seldom have the need for pain medication.
I was recently told that the Syndrome could be causing unknown damage to my body. Is this true, and if so what type of doctor should I seek out for advice. We only have one endocrinologist in the surrounding 100 mile area and it is difficult to get in to see her. I am very leery of the “untried” new medicines on the market due to the lengthy list of side effects including leukemia.
So, I guess my question is: Although I am able to manage effectively, is the medication available to treat my conditions necessary and/or worth the risk of side effects?

Hello and thank you for your question.


Sjogren's syndrome as well as many other autoimmune disease (like Rheumatoid Arthritis) can be very difficult and frustrating to treat.

You are correct in that for Sjogren's syndrome the medications treat mainly the symptoms of the disease. However, the medications also help prevent secondary complications of the disease. For example, one of the most common symptoms of Sjogren's disease is dry eye and dry mouth. For some people this is just an irritation, but if left untreated severe dry eye can lead to corneal infections and scarring. Dry mouth can lead to dental carries also. As far as arthritis, some autoimmune diseases can be associated with an erosive type of arthritis. Without treatment of the underlying disease erosive arthritis can be very destructive to the joints.


So to answer your question, in most cases the benefits of treatment out-weigh the risks.


You also asked about the type of specialist you should see. I would recommend that you see a Rheumatologist, as they usually diagnose and treat Sjogren's syndrome and other autoimmune problems. There are also other medication options as well. I don't know what medications you have tried, but a Rheumatologist can certainly help guide you in that manner.

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