Trying to get an opinion on whether or not I should go ahead with my instincts and request a biopsy.
Posted Nov 15 2011 8:00am
I am 51 years old. I have lupus (SLE) x 39 years, with scleroderma, sjogren's, possible myositis, gastroparesis, antiphospholipid antibodies on coumadin for previous TIA's and PE, past exposure to Eppstein-Barr Virus, family h/o acute monocytic leukemia in my mother, long-term use of prednisone (with very high doses at times) and Imuran. No longer on imuran but now on methotrexate and still on prednisone. Recent CXR showed lymph node in my chest, apparently with only very slight change since CXR done in July. (I was not informed of the CXR results in July. CXR done for cough that would not go away.) I also have a lump on my R scapula approximately 3cm x 1cm (soft but feels like it has liquid in it), and one on the L side of my back at the lower part of my ribs that is very hard and about 1.5 x 2cm. There are also some smaller lumps on my arms around my elbows. I have lost 10 pounds in the last 3 wks without trying but assumed it was due to a dx of gastroparesis with recurrent severe heartburn, bloating, and abdominal pain. I also have frequent low-grade fevers, 99.6 to 100.1, without any signs of infection but have assumed it was due to the lupus. I have occasional night sweats that are occasionally severe enough that I have to change my clothes and a couple of times had to change the sheets - we keep the room temp at night to no higher than 65 and usually only sleep with a sheet and a thin blanket in the winter, of course if it gets colder in the winter requiring more cover, then we get more cover. I have severe fatigue and weakness. If anything at all, the fatigue is probably my biggest problem. I has been so severe as to disrupt my life and my family's life. There are days when I cannot get out of bed at all. There are days when I do get out of bed but have to stop frequently if trying to do any household chores. I frequently fall asleep without even knowing I am sleepy - sleep apnea and narcolepsy have been ruled out. I also had a recent CBC that showed my hgb to be borderline low (10.5). My iron levels were normal and I have not had any problems with anemia since I had my hysterectomy 11 years ago, as a matter of fact my hemoglobin has been on the high side of normal. Sedrate elevated at 38, and alkaline phosphotase have been continually elevated for the past several months. Also seem to be more prone to infection than in the past. Last WBC 5.5
My doctor wants to wait for three more months and repeat the chest xray, but my husband and I just don't feel comfortable doing that given all the other things that have been going on. And with the Christmas season coming up, I would rather not go around with that over my head.
If any of you have any suggestions or comments please let me know. Thanks