I too was diagnosed with Lupus in 2003 and secondary Sjogrens 5 years later. I was surprised about
the Sjogrens also as I did not have dry eyes/mouth at that time(I do now)...only a big toe that burned at the base. Rheum looked at me like I was nuts and "well ok...I'll run some tests".. Then it was "wow. you Do have inflamation." No kidding, hence the burning digit. Anyway, I just figured that I had the markers for it but not necessarily the common symptoms. There are many other symptoms of Sjogrens...those I seem to have - joint pain, headaches,vertigo...the symptoms overlap with Lupus and I certainly dont know which is which. The most distressing is the fatigue.
Here is what I wanted to impart to you...I have been on hydroxychloroquine(plaquinil) since 2003 ( the diagnosis of Lupus.) I have been exhausted - I mean sleeping 12 hours a night and then 3 or 4 more during the day, still remaining really really tired. I recently spoke to a friend diag with Lupus who said that she tried the hydroxychloroquine(Plaquinel) and that it made her tired. Desperate for energy, I have weaned myself off of it and I have alot more energy. I also have alot more joint pain so it appears that I traded one for the other. I dont know if it is a common side effect of Plaquinil but it certainly affected my energy in a negative way. Look up the AARP list of drugs and side effects for plaquinil...that site had alot of info that I had not seen elsewhere.
Let me know what you find out with the second opinion. I am sorry that you are having to deal with this. It is hard...I continuously hear " You dont LOOK sick." But the thing is, we know our bodies and when they are not functioning right.