Posted 5/27/2014 3:53 AM (GMT 0)
Hi i am new to the group. I am a 27 year old female recently diagnosed with lupus. I had my sweet baby boy back in march of 2013 which is when my joint pain started. I thought i was just having a hard time recovering from child birth and exhaustion from having a newborn. Finally in December of 2013 I went to an urgent care facility where this awesome doctor randomly drew an ANA test. It came back off the charts at 5120! So that set me down the rhuemy/autoimmune path. They did further labs that solidified the lupus diagnoses. I have a very high anti-DNA number, high sed rate, low vitamin d. They started plaquelinel, Vit D 50,000 and prednisone and sent me to the kidney doctor because I had protein in my urine. After an ultra sound and 24 hour collection (soo fun!) they decided it's only trace protein and just needs to be monitored twice a year to make sure it doesn't get worse!! Yippee! I found a new rhuemy in March that I really like. He verified all my labs again and said I would be an excellent candidate for a trial study for an infusion drug call ezparth... Something. Well we spent two months trying to get me in the trial but the first time I got a sinus infection right before my start date so we had to start over and then the second time my liver enzymes shot up, got an ultrasound and my lover was inflamed so they would not allow me to be apart of the study. :( so back to the rhuemy last week. He retested liver enzymes after 3 weeks and they had gone back down so he prescribed Imuran. My biggest complaint is my joints. I have severe pain in my hands, wrists, knees and feet. With all the storm pressure recently it has flared up so bad! I struggle with hair loss, photosensitivty rash, severe fatigue, unexplained fevers and general crapty feeling. I realize I am lucky to get a quick diagnoses but am getting frustrated with how sick I still am. Between the prednisone weight gain and acne and the hair loss from the disease I barely recognize myself and hate the way I look. Meanwhile I chase around a 14 month old and try to work 3 days a week. I feel like I am barely surviving. I have good days but a lot of bad ones too. I just hate this! I know my husband gets tired of hearing about it. I am doing the best I can but feel like I am burning the candle at both ends. I can't gety numbers down or my pain under control. I am also bummed because they have told me not to have another baby for quite some time until my health is better. This turned into much more of a vent than an introduction but thanks for reading and any words of incouragment would be greatly appreciated!