Hi. I’m from a very small town in Idaho with limited medical resources. I originally saw a general practitioner in town who diagnosed me with Fibro without performing any tests and tried to prescribe Cymbalta. I refused to take the medication without any testing being performed. Later, after an elevated SED rate, he determined I had inflammation that was not consistent with Fibro and tried to prescribe Prednisone. My ANA was negative, so he ruled out any autoimmune diseases. I refused the Prednisone and requested a referral to a rheumy, who is about 150 miles away. My rheumy diagnosed SS based on the dry eyes, dry mouth, joint pain, etc., and also confirmed the Fibro diagnosis. He has not prescribed any medication at this point, just some exercise, anti-inflammatory diet, OTC eye drops and mouth wash, and supplements. He also believes that there is another underlying autoimmune disease and we are performing tests to determine what it is. My ANA is still negative and my SED rate was no longer elevated, and CRP was normal. He tested for many different autoimmune disease markers, but I have not received the results of those blood tests yet. On the one hand, I am very happy that aside from the dryness and pain, I don’t seem to have SS nearly as bad as it could be and am glad to not be on a bunch of prescriptions. On the other hand, how odd is that? Should I have been placed on something, or is it normal to take a very cautious approach to medicating for this disease? I would prefer to do everything as natural as possible, as long as I can tolerate the pain and fatigue, but from my research it seems like the best results are if the proper treatment is given early on. I don’t want to make things worse because I’m not getting the proper medication. I also start to doubt the diagnosis with a negative ANA, and normal SED and CRP. Any insight or suggestions would be most helpful. Thank you.
First, welcome! I am sorry to hear about the diagnosis. I find it strange the way your doctors went about getting your diagnosis and I guess I would feel the way you do, that is… unsure about everything. I would wait for the results. Sometimes you can have a negative ANA and still have symptoms of the autoimmune disease. It’s too soon to tell but you could also try getting a second opinion if you feel it is necessary.
About the medication, I couldn’t say whether or not you should have taken it. I would say that falls into the category of whether or not you want a second opinion before going the route or steroids or other meds. Most rheumatologists that know Sjogren’s can tell right away. My rheumy took a good look at me and knew it. He did the ANA test a second time just to prove it. I have always had a high positive result. Again, even without a positive you can have an autoimmune disease.
You have support here. I hope that I was at least a little helpful. Stay strong.
Thank you. I will wait a bit until I decide whether or not to get a second opinion. There are many things I like about this rheumy, so I will try to refrain from jumping ship. He does seem to know Sjogren’s very well and I do appreciate a conservative approach with medications, I’m just a bit overwhelmed at the moment. I’m very glad to have found this site. From reading posts, I have already gained a great bit of information.