Hi there,
I am a lurker - I read this forum frequently, but don't post too often. However, this topic speaks to me since I was diagnosed with Lupus when I was 17 years old (symptoms were frequent canker sores, pain and swelling in both hands and fingers, elevated ds-DNA, positive ANA, high sed rate, etc.).
At the age of 20, I developed ITP with a platelet count of 10K. Was treated with Prednisone and weaned over about 2 months time. 6 months later I developed TTP, was treated with Solu-Medrol (later changed to Prednisone) and plasmapheresis, and weaned off Prednisone about a year later. Both my hematologist and rheumatologist both strongly suspected my ITP/TTP was secondary to Lupus.
For the next 5 years, I had normal-ish platelet counts requiring no treatment. The platelets dropped to around 90K shortly thereafter and stayed in the 80-90k range for many years, again requiring no treatment. During this time, I was taken off Plaquenil (a drug used to treat Lupus) and had my son who is now 7 years old.
3 years ago, my ITP returned worse than before. I had no response to Prednisone or Dexamethasone, so I treated with Rituxan. I received a remission of just under a year, before platelets dropped again to 6K. I attempted another Rituxan course, but had an allergic reaction half-way through the 3rd (of 4) infusions. Needless to say, I did not finish the Rituxan course, however, I did have a response from the Rituxan I did get, with fairly normal counts going on 2 years now.
Ironically, I've never had joint pain/swelling or other Lupus symptoms since my initial diagnosis. My lupus manifestion seems to be the ITP.
I am currently taking no medications - my "Lupus" laboratory studies are pretty good right now (except my sed rate which is always very high) and I don't plan to treat my ITP unless my platelet count dips below 30K. I get a CBC monthly and see my hematologist every 6 months. I see the rheumatologist every 6 months as well. I neither worry about the ITP or Lupus nor do I allow it to effect the way I live my life. Before I had my son, I used to dwell on every ache, pain, or bruise and now I guess I've just gotten to the point where I don't worry about it anymore. If I see an increase in bruises, I'll get another CBC. I do worry about the increased inflammation (the high sed rate) but my rheumatologist consistently says that they don't "treat" a high sed rate, they treat any symptoms that may develop from the high sed rate.
So, hang in there! You're not alone, if you do happen to get that Lupus diagnosis. These boards are very helpful and the community is very supportive.
~Lauren