the autoimmune professor

I head back to the rheumatologist in Chicago who tells me that my ANA is high with a homogenous pattern which is a lupus pattern. This is one of the indicator tests for autoimmune. It is not diagnostic, but can sometimes point doctors in the correct direction, especially if your symptoms are overlapping. This is a test that I have noticed in the community gives people anxiety and is very confusing. One place that I found to be very helpful is www.anapatterns.org. It lists every ANA pattern that can be found in the blood along with association with specific diseases. In addition to the high ANA, I also have a very high sed rate, high c reactive protein, high rheumatoid factors, high SSA factor (which I am told can be Sjogren’s or lupus) and high c3 and c4 complements. These are normally low in lupus patients; however, they are still abnormal in my case. Furthermore, my white blood cells have gone up as well as my lymphocytes, my monocytes, and my eosinophils. At this point the doctor is somewhat dumbfounded (again one of the top lupus experts in the country), because my blood shows lupus along with other stuff, but things that should be low are extremely abnormally high. At this point he decides that I need to go on prednisone as this will give him a clear picture of whether this is autoimmune or if it is something else. He tells me that if the prednisone clearly helps then it is definitely autoimmune and starts me on a 2-month course of 40mg a day, going down 5 mg every week until I am at 5 mg and then I come see him again.

I have a major love/hate relationship with prednisone. I loved it so much; I called it my crack because for the first time in a long time I felt normal. I slept normal, I had energy, I was getting up in the morning at normal times, and I was accomplishing so much and getting so much done. I did find that my sweet spot was at about 20mg. However, I also gained 30 pounds in those 2 months and that was while I was watching what I was eating and exercising because I knew exactly what prednisone does to our bodies. I also started having extremely high blood pressure, extremely high eye pressure, heart palpitations, and some asthma issues all which went away when I stopped the prednisone. I had to follow up with a cardiologist to make sure that I did not have any damage done from the prednisone and found that that while thankfully I did not, I am only to take it in an emergency. Though the optometrist did say that I had an abnormal change in my eyesight compared to my normal yearly changes. In the meantime, I also get the results from my skin scraping which has come back “indicative of connective tissue disease such as lupus erythematosus, discoid lupus, cutaneous lupus, or dermatomyositis”. I also find out that one of my mole biopsies was pre-melanoma. Thankfully, it was pre and they caught it early as well as got all of the margins.

I returned to the. Rheumatologist in January and run all of my blood tests yet again. This time my ANA has lowered, but everything else has gone up once again including my white blood cells, lymphocytes, and monocytes. My rheumatologist wants to start me on Benlysta, but with the level my white blood cells and lymphocytes have been at, he cannot give me Benlysta if I have some infection, so he sends me to a hematologist/oncologist. Before I see the hematologist/oncologist, I have my yearly check-up with my general practitioner which results in more blood work (I swear I am becoming a human pin cushion). He also runs some random bacterial and viral tests which leads to a positive Lyme test along with even higher white blood cells and lymphocytes. I had an infection or what was thought of as gout in my ankle (see pic) in August during my flare. However, at that time, I had been trying to get more energy and was hiking in the dunes near Lake Michigan which is overrun with ticks. I never saw a bite, but once I showed the pic to my doctor, he was almost convinced that it was Lyme in my joint. He put me on a 30-day cycle of doxycycline and I re-schedule my appointment with the hematologist/oncologist for once the antibiotics are done as the Lyme infection can mess with my blood cell levels.

I follow up with the hematologist/oncologist towards the end of February and once again I have numerous blood tests which include leukemia and lymphoma tests as well as a full abdominal CT scan. All of these tests come back negative. I once again have more blood tests as a follow-up and again my white blood cells and lymphocytes are too high with no known cause.