Tuesday, April 1, 2008

In the Beginning...


...I had chest pain - sharp, intense, terrible pain that kept me up at night. Although my primary care physician was reluctant to order chest x-rays, I insisted, as the pain had migrated to my back and side, and I struggled to sit, stand, and breath because of it. The x-rays revealed that the lining around my lungs was filled with fluid, called pleural effusion, and I'd developed a fever, swollen glands, joint pain and swelling throughout my body. I was referred to a pulmonologist, and then a rheumatologist, who both confirmed that I had SLE. I consider myself lucky, because within three weeks of getting the results of the x-rays, I had a diagnosis. Immediately my team of doctors put me on a high dose of prednisone and several other medications, but when the fluid remained, I had to have it removed two separate times, via a procedure called a thorocentisis. It took almost 6 months before I felt like my disease was even somewhat manageable. Until then, I really struggled with the concoction of medications, my limited mobility, and the adjustment to life with a chronic illness. If you're in the beginning stages of a diagnosis, don't lose heart. Life with Lupus does get better. It just takes some trial and error, a little bit of guesswork, and a whole lot of patience. The LFA website has a great series of articles geared toward the newly diagnosed. Check them out here!

2 comments:

RK said...

I was diagnosed with SLE back in Spring 2009, but never had any issues other than a little joint pain here and there. I got married last July and was sick on my honeymoon. Little did I know that's when the Lupus had began to affect my lungs and I ended up with pneumonia by the time we came back! I went to the dr. and was given antibiotics and a short dose of steroids and was told a few weeks later (and by chest xray) it was clear. A few weeks later I started having a hard time breathing again. After putting it off for a good week or so I finally went back to the dr. only to find out I now had a bilateral pleural effusion and was sent to the hospital. They perfomed a thoracentesis and drained almost a liter of fluid! This was in Sept. of last year and since then I've been up and down with the steroids and meds, and the pleural effusions keep coming back. I finally was referred to a pulmonologist and my rheumatologist has recently started me on Methotrexate (along with the Plaquenil I've been taking) and I'm tapering off the steroids finally! I'm really hoping and praying this will work because I'm sick of having breathing issues and having to sleep sitting up all the time! I'm surprised you were never put on Methotrexate to help with your pleural effusions?? Curious as to what all you took/did to keep them from returning!

Sara Gorman said...

RK - Thanks so much for sharing! here's hoping the methotrexate does the trick for the pleural effusion. I, too, was very frustrated when my fluid came back (and/or wouldn't go away), but it finally subsided. High doses of prednisone really did it for me, but eventually, i started cellcept to keep my disease under control (along with continued prednisone, plaquenil, NSAID's, and antihistamines.) Today, i'm on plaquenil, cozaar (for kidneys/protein), and a maintenance dose of prednisone...and haven't had fluid for years. I do feel a little tinge of pain from scar tissue around my lungs, but I'm just thankful the fluid has stayed away. it does take time, and just the right combo of meds. Fingers crossed you're on the right track now!