When patients are diagnosed with two or more autoimmune diseases it is called autoimmune overlap syndrome.
I was diagnosed with systemic lupus in 1989 after months of severe fatigue, joint pain, and stiffness that moved around to different joints, skin rashes, and feeling unwell most of the time. I got married one week after my official diagnosis.
For the next year and a half, I did fairly well while under the care of a rheumatologist and taking prednisone and plaquenil. Eventually, I decided along with my doctor to stop taking plaquenil in order to try to get pregnant. After being off plaquenil for about six months I began to feel unwell again.
Blood work, urine tests, and finally a kidney biopsy revealed that I had developed lupus nephritis. During this time I changed rheumatologists and I was taking 60 mg of prednisone daily. I was also receiving monthly infusions of the chemotherapy drug Cytoxan. What is ironic is that this drug causes sterility in women over thirty. I was thirty-four. Not what you want to hear when you are trying to get pregnant.
After eighteen months of chemotherapy and prednisone, I was doing much better. I was doing so well that my doctor said I could stop the chemotherapy. Within one year my husband and I were expecting our first child. Stephanie, our daughter was born about three weeks early and weighed five pounds, two ounces. She was small but she was healthy- a true miracle and a gift from God.
My lupus went into remission after the birth of our daughter. I continued with my annual checkups with my rheumatologist. At one point he said to me “If I did not have your medical records to show it, I would question whether you have lupus.” I was very happy to hear those words. My lupus has remained in remission for the past 26 years.
Three years ago I began to have problems with severe Raynaud’s phenomenon.
Raynaud’s phenomenon is a problem that causes decreased blood flow to the fingers and or toes. This decreased blood flow caused pain and ulcers on some of my fingertips. They sometimes would become infected and I would need to go on antibiotics. There were occasions when I needed multiple rounds of antibiotics before the infection would go away. These infections always occurred in the colder months.
After the second year with these symptoms, my rheumatologist referred me to another rheumatologist who specialized in the diagnosis and treatment of scleroderma. After many tests and evaluating my fingers under a large microscope, it was determined that I did indeed have scleroderma. The three symptoms that I had were Raynaud’s, digital ulcers and pain, joint pain, some hardening of the skin on my hands as well as swelling of the hands.
My rheumatologist referred to my type of scleroderma as CREST syndrome.
Crest syndrome is also known as, a limited cutaneous form of systemic sclerosis. It is a multisystem connective tissue disorder. The acronym “CREST” refers to the five main features, calcinosis, Raynaud’s phenomenon, esophageal dysmotility, sclerodactyly, and telangiectasia. Four of the five features were present in my case: calcinosis, Raynaud’s, and telangiectasia, which are dilated small blood vessels on the skin in my fingers. I would need to be followed by a gastroenterologist to watch for the development of esophageal dysmotility where the muscles in your esophagus fail to contract and the esophagus does not properly deliver food and liquids into your stomach.
While I knew that I would be dealing with this new autoimmune disease for the rest of my life I also knew that things could be much worse. These symptoms would require close attention and care but they were very manageable. Many people with scleroderma have major organ involvement and their condition can be life-threatening. Mine fortunately at this point, was not.
I feel very fortunate to have the most devastating effect of my autoimmune disease, lupus nephritis, behind me. I know anything can happen and things can change, sometimes quickly. I am still grateful for the great care I have received from my physicians and my family, especially my husband. For right now I am just taking things one day at a time and I hope what I have shared can help someone else who may be dealing with an autoimmune disease overlap.
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