Old, New Or Same?

A few weeks ago, I was looking over my initial diagnosis records from Mayo Clinic back in 1996, and I noticed my SLE (systemic lupus erythematosus) showed that it was positive. 

I had lupus this whole time? I contemplated for a few days whether I had a misdiagnosis. I also questioned whether I was in good hands and receiving quality care with my doctors over the years.  

A week later, I had a follow up appointment with my rheumatologist, and I showed him these records. He ran various blood tests to confirm that I have a positive SLE along with a positive rheumatoid factor. I have more symptoms of joint erosion with rheumatoid arthritis, however, it is now certain that I have two autoimmune diseases; juvenile rheumatoid arthritis and SLE (lupus). There's no way for doctors to tell which disease is more active and causing symptoms. 

Lupus is a chronic autoimmune disease that causes inflammation throughout the body. It can affect the skin, joints, kidneys, lungs, nervous system, heart and brain. Lupus flares from mild to severe throughout the course of the disease and patients have times when the disease is more active and times where the disease is more quiet. When it's active, other immune cells are starting to attack your own body (in a similar way rheumatoid arthritis will attack the lining of your joints) and causing widespread inflammation. When inflammation is present in lupus, it causes abnormal blood vessels, and the antibodies then end up in cells that attack the organs. 

According to an article I read on rheumatoidarthritis.net; "Although the prospects of long-term survival for individuals with SLE is better today than it has ever been, largely due to treatment breakthroughs, the likelihood that the disease will prove fatal is still high. Someone who is diagnosed with SLE at an early age (around 20 years) still faces a 1 in 6 chance of death by the age of 35."

That was a little daunting to read, but the good news is I'm beating the statistics. 

I'm confused if I have RA with overlapping SLE, or SLE with overlapping RA. I don't know which disease came first, if I had the correct diagnosis, or if doctors are certain what the true diagnosis is. If no one is able to accurately diagnose an autoimmune disease, then aren't all autoimmune diseases essentially the same?

Treatment for both RA and SLE are similar by using medication to slow down the activation of T-cells and B-cells, and by reducing inflammation present in the blood. In addtion, my doctor added Plaquenil which is a drug used to treat malaria. It belongs to a class of medications know as disease modifying antirheumatic drugs (DMARDs) to treat autoimmune diseases like lupus and rheumatoid arthritis. 

Some good news...

My rheumatologist also tested my C-reactive protein (protein found in liver to detect inflammation) and it was remarkably low (0.03). Standard range is below 0.3 mg/dL. This is much better than the results back in November, when my C-reactive protein was 2.40. These results suggests that my Actemra injection is working and reducing inflammation. I have been on Actemra for just about one year, and it does seem to be helping, although, I'm still experiencing agonizing pain and fatigue daily.  

My inflammation has never been this low (that I have on record anyway). I will go back for another follow up appointment in April to see if the inflammation is still under control. 

My doctor and I discussed starting Rituxan, which is a cancer medication that interferes with the growth and spread of cancer cells in the body. I heard good things about this treatment and I'm wondering if it would help more with pain and joint damage. In addition, you only have to get the infusion once every 6 months, versus the injection I take once a week.