I don't know if I have lupus or not. What I'm looking for is a little guidance on what I should be doing as far as testing and visits to my doctor now...first, a little background (sorry, this is a little long):
* In 2009, I developed a red rash on my forehead after spending the day at the pool. I thought it was a weird sunburn, but it just wouldn't go away, and started spreading to my cheeks and behind my ears. I was also experiencing a lot of stress at that time due to a death in the family. I finally visited a dermatologist; she tried antibiotics and steroid creams with no success. She biopsied it in December of 2009 and diagnosed it as a cutaneous form of lupus. She prescribed Locoid lotion, and the rash improved, but wouldn't fully go away. In August of 2010, she prescribed Hydroxychloroquine, which I took for one month. The rash was completely cleared up at that point. My dermatologist suggested continued sun protection, and using the Locoid lotion as needed if the rash returned.
* In January of 2010, as a follow-up to the biopsy, my dermatologist had me get some bloodwork done. The results came back with an ANA titer of 1:80, speckled pattern. Everything else was negative. She noted that this was a pretty low titer, and did not seem to think I had systemic lupus, only skin involvement. I have not repeated those tests since that time.
* As of this year, 2011, I tend to have little mini-flares on my skin if I spend too long in the sun or if I am really stressed out. They usually go away with more studious application of the Locoid and trying to reduce stress.
* Other info: For the past four years, I have had intermittent hip pain on the left side only. It comes out of nowhere, seemingly unrelated to any activity I've done, and hurts more when bearing weight. I have not reported it to my docs (don't want to be a hypochondriac, afraid of expensive tests, didn't have insurance for awhile, etc.). I also experience fatigue, but I have always chalked that up to not exercising or eating right. I am 29 years old, 5'6, and weigh 135 - I'm not really overweight, but I'm also not the fittest person ever.
So I am left wondering if I should be repeating the ANA test periodically, or doing anything special to check that this hasn't developed any further. I reported all of the info from my dermatologist to my primary care physician back in 2010, and they have not requested that I do any further testing at any point. In fact, I just scheduled a routine physical with them, and the only bloodwork they requested is their standard physical workup. I just called and asked the nurse to verify whether they want me to repeat the ANA test or not. She seemed to think it wasn't necessary. At the upcoming appointment, I am also planning to finally have them look into the hip pain. Is there anything else I should be doing?
Thanks in advance for any insight you can offer or resources you can point me to. Ever since the dermatologist said "lupus," I've been feeling a little scared, but yet I haven't really taken any action to investigate further whether I really have it. I guess I haven't wanted to know if I have "real" lupus or not - in some silly way, I figured if I don't get the diagnosis, I won't really have any of the problems. But my husband and I are considering children in the not-so-distant future, so I think I need to figure this out for sure, one way or the other.