sandy mcelgunn

Clinton Township / Behcet's / 64

Sandy has Behcet's disease, a rare autoimmune condition, of which a main symptom is severe damage to the blood vessels throughout the body. Sandy recalls suffering from symptoms as early as when she was in the third grade, but it took about a decade of trying to accurately diagnose her symptoms that she finally received the diagnosis in her 40s. She also has conditions including rheumatoid arthritis (RA), fibromyalgia, vasculitis, and Raynaud's disease.

It’s never been easy getting the treatment I need. Looking back, I know I started to have symptoms of an autoimmune disease when I was in the third grade, but it was much later when I started tracking my symptoms and working with doctors that I received an accurate diagnosis. I was in my 40s before I finally found out that I had Behcet’s.

Along the way I’ve tried more treatments then I can keep track of – Enbrel, Remicade, Humira, and so many more. The Coltrazine made me sick, but the Methotrexate was even worse, and any time I get put on Prednisone my face gets puffy and I become too hyper to sleep at night.

When I use biologics to treat my disease, after a while my body adjusts to them and I must find a new drug that will work. But because Behcet’s is a rare autoimmune disease, and these biologics are not specifically labeled for Behcet’s, my insurance company mandates that I must go through step therapy first. Each new drug has the same process and the same fight of trying to get access to the medications I need.

Having symptoms and dealing with multiple autoimmune diseases is a huge burden. If there is one silver lining to having multiple diseases it’s that my doctor can prescribe medications for other autoimmune diseases that I have like rheumatoid arthritis or vasculitis instead of my primary condition. But, each time I go through this process of trying to access RA and vasculitis medications, it takes months before I can get back to managing my health. I have to deal with uncontrolled symptoms for three or four months – and that’s every time we need to adjust medications.

When my Behcet’s goes untreated my life gets put on pause. I constantly get at least 10-12 ulcers if not hundreds. I can’t eat. I live of breakfast shakes because that’s the only nutrition I can get into my body.

Thankfully, right now I’m in a study for a drug and the results have been amazing for me. I don’t have to go through step therapy or my insurance company. But once the study is over, I’m terrified I will have to start the process all over again. I’m lucky to have a doctor who fights so hard for me, but I know others are not so fortunate.

For me, I need to dedicate all of my energy to managing my symptoms and must rely on my doctor to find medicines that will help. When insurance companies require step therapy, it interrupts my life and makes me tremendously sick. I should not have to work this hard to get medicine my doctor knows will help make me better.