LUPUS FOUNDATION OF AMERICA - What Does 50 Years Without a New Lupus Drug Mean to You?

What Does 50 Years Without a New Lupus Drug Mean to You?

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Hello, my name is Jennifer Hill and I found out I had lupus two years ago this Christmas. It was quite a relief being diagnosed because I had been going to doctors for almost 7 years with transient symptoms that no specialist could explain or connect to one another. It was me who finally asked my primary care doctor if I had lupus. My doctor cocked his head to the side, scratched his head and said "maybe". One ANA screen and a visit to the rheumatologist and I was on my way to solving the cause of almost a decade's worth of unexplained ailments.

Now I struggle with finding the right cocktail of medications. Still after almost two years, I long for just the right mix in order to find remission. I currently take anti-seizure medicine, Plaquenil (anti-malarial), low dose aspirin (to prevent heart attack and stroke), methotrexate (low dose chemo), prescription vitamins, Etodolac (anti-inflammatory for my joint pain), thyroid hormone, sometimes a steroid dose pack and other medicines as other symptoms appear (such as ointment for mouth ulcers). These have provided temporary relief of some of my symptoms but none have relieved all. Each day is a gamble of whether I will be able to face all the physical and mental challenges for the day. There are some days I can't even brush my own hair. This is quite difficult for an independent minded soul I'll tell you but I just take each day to the best of my ability.

After talking to others with lupus, they too take a myriad of pills and cope with the break through symptoms. They, like me, weigh the options, risks and benefits of each drug treatment. We take drugs meant for other conditions but partially help us with our menagerie of ailments. 50 years of technology and science advances have seen other illnesses eradicated or even cured and yet people with lupus have not seen a new drug treatment in this time. Perhaps the key to unlocking this immune system mystery could lead to other valuable medical discoveries. I would greatly appreciate your support in encouraging lupus research and further drug developments.

Jennifer Hill
Woodstock, Georgia

Stories from Around the Country

Read stories from other people who living with lupus, and what having no new drugs in 50 years means to them.