While I didn't receive my official lupus diagnosis until 2018, I have been experiencing lupus systems since Ally's birth in 2014. A lupus diagnosis is hard to receive; it is often called "The Great Imitator" because its symptoms are often like the symptoms of rheumatoid arthritis, blood disorders, fibromyalgia, diabetes, thyroid problems, Lyme disease, and a number of heart, lung, muscle, and bone diseases.
I saw 7 different doctors before I got an official diagnosis; it took visiting 4 doctors for anyone to suggest that lupus was a possibility. I was told by doctor number 1 that my extreme fatigue (my most concerning symptom at the time) was just a result of having a young baby at home. I was told that my problem was low vitamin D. Doctor number 2 gave me blood work and found that I was ANA positive, and referred me to doctor number 3. When I saw doctor number 3 (a rheumatologist), and asked for different medication as I was feeling no relief from his previously provided NSAIDS, I was told "You aren't going to become crippled, or deformed or die until your next appointment in two months".
No one thought I was sick enough to begin plaquenil (the most common lupus drug, an anti malarial also nicknamed "Lupus Life Insurance") until I got to doctor number 4. He told me to take plaquenil for 4 months (that is how long it takes to be fully effective) and if I felt better I had lupus and if I didn't I would know that I didn't have lupus. Doctor number 5 diagnosed me with Undifferentiated Connective Tissue Disease and told me that was a diagnosis that the insurance company would like better than a lupus diagnosis. I went to doctor number 6 for a second opinion because I was sure at this point by my symptoms (fatigue, chest inflammation, swelling in my arms and legs, debilitating pain in my left arm, butterfly rash, sun sensitivity, just to name a few!) that I had lupus. Doctor number 6 agreed with doctor number 5. I went back to doctor number 5 (who is one of my current rheumatologists, yes i have more than one!) and was finally able to be prescribed some imuno-suppressive mediation. However, this medication didn't seem to be making any improvements to my quality of life.
Eventually I made an appointment with Johns Hopkins University Rheumatology Center and doctor number 7 finally gave my official lupus diagnosis. She also altered my medicine and it brought some additional relief.
Additionally, I have now added Benlysta to my list of medications in order to stay off prednisone for regular flare ups. Benlysta is the first drug approved specifically for lupus and requires monthly iv infusions I take over a several hour period.
However, feeling better does not equal my pre-lupus self. For example, I am unable to walk long distances without effort, and have to be shielded from the sun by wearing UV protection clothing and 100 spf. If I do take a day to enjoy something strenuous; I will be in bed recovering for at least a day afterwards. There is no cure for lupus only medication to help mask the symptoms.
My prayer is that one day there will be a cure so that no one else has to suffer from this horrible disease. I have been told that my lupus is "not active" at this point, which means that I don't have organ involvement. I can't image the extra toll that puts on a person's body.
So I’m Walking to End Lupus. Join Me?
Will you make a donation to help me reach my personal fundraising goal and support the Foundation's efforts to improve the quality of life for estimated 1.5 million people affected by lupus?
Did you know?
- Lupus is a mysterious and misunderstood autoimmune disease. It strikes without warning, affects each person differently, and has no known causes or cure.
- Lupus symptoms can be severe and highly unpredictable and can damage any organ or tissue, from the skin or joints to the heart or kidneys.
- While lupus can strike anyone at any time, 90% of people living with lupus are women. Women of color are at especially high risk.
- Only one drug has ever been developed and approved by the US Food and Drug Administration specifically to treat the disease.
Together, we can solve the cruel mystery of lupus. Thank you for your generosity!