Hello. It's been a little bit since I last updated here. I initially came here after having discovered that I have a positive ANA 1:640 (speckled pattern) as well as joint pain and a photosentive rash. I also have another autoimmune illness (Hashimoto's thyroditis) and have been diagnosed with fibromyalgia. SLE runs in my family - my mother was diagnosed with SLE in her 30s after having a PE and also having kidney issues. My great-grandmother also had SLE.
Over the past year, I've had spotty abnormal labs - I went for an appointment and my ESR was 40. I ended up flaring the next day, although I didn't find out about the results until a couple of weeks later. My total protein was elevated during another set of labs, but nothing else was elevated. My rheumy was unsure as to what was causing the abnormal labs but she continued to treat me for inflammatory arthritis nonetheless. I've been on plaquenil, nabumetone and tramadol for over 2 years now.
Earlier this year, I managed to come down with Type A influenza and pneumonia. I was put on levaquin and tamiflu. I ended up taking a medication holiday from my plaquenil because I found it was really difficult to recover from both illnesses while taking it. Meanwhile, my high blood pressure, which I had previously been taking cardizem to control, continued to get worse...during a routine physical, it was 160/100 with a pulse in the 120s. (This was after I recovered from pneumonia and the flu.)
Fast forward to now. After having some GI issues and thinking that it might be IBD, as well as noticing an abdominal mass in my left lower abdomen (along with having night sweats, absolute exhaustion and chills), I was sent for a CT scan.
I haven't spoken with my rheumy yet, but I do have a copy of the CT report. Apparently, my left kidney is "heavily atrophied" with a calcification in the median calyx. Several of my mesentery lymph nodes on the left side of my abdomen were also "mildly prominent" with the largest being 13mm in size. I'm pretty shocked by this, to be honest - I've had low back pain for the better part of the last 5 years but I always assumed it was related to my scoliosis and now sclerosis and herniated disc in my back (which was also seen on CT). I've never had hematuria or any issues with urinating. I do usually have a very small amount of WBCs and epithelial cells in my urine, but nothing else. Now I'm seeing that hypertension can be a symptom of kidney problems.
Perhaps unrelated, I also had a 36x24mm lesion on the right side of my pelvis on the CT, another large lesion on my left ovary and a smaller one on my right ovary. These are listed in the report as "likely follicles/cysts." I had an endometrial stripe which popped up on CT as being something other than normal, healthy tissue. The tech asked me after the scan if I have ever been diagnosed with cancer, which I found a bit odd. According to my mom, she also had problems with her left kidney, which is severely atrophied as well, and she ended up having a total hysterectomy in her late 30s due to having a large (5 pound) precancerous mass on her left ovary. Cancer does run in our family, but so does SLE. So I'm not sure what to think.
I have an upcoming consult with a GI doc but I'm not sure that's even needed anymore...it seems like I probably need a kidney doc more at this point? And maybe an MRI? Hopefully I'll find out more soon.
I just wanted to post an update on what's been going on. Thanks for reading!
Over the past year, I've had spotty abnormal labs - I went for an appointment and my ESR was 40. I ended up flaring the next day, although I didn't find out about the results until a couple of weeks later. My total protein was elevated during another set of labs, but nothing else was elevated. My rheumy was unsure as to what was causing the abnormal labs but she continued to treat me for inflammatory arthritis nonetheless. I've been on plaquenil, nabumetone and tramadol for over 2 years now.
Earlier this year, I managed to come down with Type A influenza and pneumonia. I was put on levaquin and tamiflu. I ended up taking a medication holiday from my plaquenil because I found it was really difficult to recover from both illnesses while taking it. Meanwhile, my high blood pressure, which I had previously been taking cardizem to control, continued to get worse...during a routine physical, it was 160/100 with a pulse in the 120s. (This was after I recovered from pneumonia and the flu.)
Fast forward to now. After having some GI issues and thinking that it might be IBD, as well as noticing an abdominal mass in my left lower abdomen (along with having night sweats, absolute exhaustion and chills), I was sent for a CT scan.
I haven't spoken with my rheumy yet, but I do have a copy of the CT report. Apparently, my left kidney is "heavily atrophied" with a calcification in the median calyx. Several of my mesentery lymph nodes on the left side of my abdomen were also "mildly prominent" with the largest being 13mm in size. I'm pretty shocked by this, to be honest - I've had low back pain for the better part of the last 5 years but I always assumed it was related to my scoliosis and now sclerosis and herniated disc in my back (which was also seen on CT). I've never had hematuria or any issues with urinating. I do usually have a very small amount of WBCs and epithelial cells in my urine, but nothing else. Now I'm seeing that hypertension can be a symptom of kidney problems.
Perhaps unrelated, I also had a 36x24mm lesion on the right side of my pelvis on the CT, another large lesion on my left ovary and a smaller one on my right ovary. These are listed in the report as "likely follicles/cysts." I had an endometrial stripe which popped up on CT as being something other than normal, healthy tissue. The tech asked me after the scan if I have ever been diagnosed with cancer, which I found a bit odd. According to my mom, she also had problems with her left kidney, which is severely atrophied as well, and she ended up having a total hysterectomy in her late 30s due to having a large (5 pound) precancerous mass on her left ovary. Cancer does run in our family, but so does SLE. So I'm not sure what to think.
I have an upcoming consult with a GI doc but I'm not sure that's even needed anymore...it seems like I probably need a kidney doc more at this point? And maybe an MRI? Hopefully I'll find out more soon.
I just wanted to post an update on what's been going on. Thanks for reading!
