Sunny,
I understand exactly how you feel, I too am still diagnosed with Primary Sjogrens "with a Lupus tendency". It has been almost 4 years now and while I have many of the Lupus criteria, lab and symptoms, I don't have the DS-DNA, SM or "Lupus antibodies" (I do have positive ANA, SSA, Lupus anticoagulant and anticardiolipin, and thyroid antibodies). I don't have any major organ involvement, just skin and joints and of course the dry eyes, mouth.
I pretty much am OK with the Sjogren's dx, but still in the back of my head I suspect Lupus. I am being treated like they would for mild lupus (Plaquenil, NSAIDS, baby aspirin, Evoxac) so am OK with where I am at on that front. But the question/uncertainity still lingers in the back of my mind of it this might be lupus and is it quietly damaging my body in ways that maybe aren't showing up yet....In some ways it would be a relief to know and possibly be more open to looking at a little more aggressive treatment or at least be more proactive to try to stop a flare quickly. It is like I am always walking on eggshells, wondering if any new symptom is just "normal aches, pains and fatigue" or the start of something I need to get on top of. At least by knowing that you are indeed dealing with SLE you can decide how you want to approach new symptoms.
I was starting to feel like it has been 4 years, this is probably going to stay just Sjogren's syndrome, but I guess this can keep developing even if it has been a long time. I hope you don't develop any new problems or issues along with the new diagnosis! Good luck to you.
Nancy
I understand exactly how you feel, I too am still diagnosed with Primary Sjogrens "with a Lupus tendency". It has been almost 4 years now and while I have many of the Lupus criteria, lab and symptoms, I don't have the DS-DNA, SM or "Lupus antibodies" (I do have positive ANA, SSA, Lupus anticoagulant and anticardiolipin, and thyroid antibodies). I don't have any major organ involvement, just skin and joints and of course the dry eyes, mouth.
I pretty much am OK with the Sjogren's dx, but still in the back of my head I suspect Lupus. I am being treated like they would for mild lupus (Plaquenil, NSAIDS, baby aspirin, Evoxac) so am OK with where I am at on that front. But the question/uncertainity still lingers in the back of my mind of it this might be lupus and is it quietly damaging my body in ways that maybe aren't showing up yet....In some ways it would be a relief to know and possibly be more open to looking at a little more aggressive treatment or at least be more proactive to try to stop a flare quickly. It is like I am always walking on eggshells, wondering if any new symptom is just "normal aches, pains and fatigue" or the start of something I need to get on top of. At least by knowing that you are indeed dealing with SLE you can decide how you want to approach new symptoms.
I was starting to feel like it has been 4 years, this is probably going to stay just Sjogren's syndrome, but I guess this can keep developing even if it has been a long time. I hope you don't develop any new problems or issues along with the new diagnosis! Good luck to you.
Nancy
