What It's Like to Live With Lupus and Diabetes

Patient Expert

In 1987, when I was 33, I was diagnosed with lupus, a chronic inflammatory autoimmune condition. I have managed it well on a combination of the medications hydroxychloroquine and the corticosteroid prednisone.

But long-term steroid use can induce diabetes, a fact I was shocked to discover at a visit to my rheumatologist in September 2006. The blood tests he ordered indicated a blood glucose level of 211 mg/dl. I had type 2 diabetes.

I didn’t know then that the increased thirst, frequent urination, or a jittery feeling after eating a high-carb meal or snack that I’d been experiencing were warning signs. I’ve been a vegetarian since college, I’m tall and thin, and I have no history of diabetes in my family. I was stunned!

I listened as the doctor explained that steroid use can interfere with glucose metabolism and trigger diabetes, and told me I would need to modify my diet and take oral medications — metformin and glipizide — to control it. The diet part was more daunting than increasing the number of medications I had to take. I normally ate a lot of pasta, bread, and fruit, and would have to severely cut back on those high-carb favorites.

Necessity being the mother of invention, I discovered substitutes like shirataki noodles for pasta, low-carb tortillas, and ice cream pops and chocolate for their carby counterparts. I filled my plate with salad and veggies and low-glycemic berries instead of high-sugar fruits. My diet got healthier.

But as time went on, I needed increasingly higher doses of the oral diabetes medications. Then, in the Spring of 2012, I began experiencing dizziness, headaches, fatigue, muscle weakness, and leg cramps. In July, I was rushed to the hospital, diagnosed with brain abscesses of unknown origin. Were they bacterial? Caused by a virus or fungus? There was no way to know. They were located too deep in my brain for a surgeon to operate safely. What is certain is that my compromised immune system left me vulnerable to the infection.

I spent nearly three months hooked up to IVs infusing me with multiple antibiotics. They worked, thankfully, but played havoc with my blood sugar. Highs of 400 mg/dl or higher were common, so I was given insulin several times a day. There was no turning back. I’ve been on both fast-acting and long-acting insulin ever since, without oral medications, and have had to increase the dosages over time.

But blood sugar control is only one aspect of managing my two conditions. Having a weakened immune system means being extra vigilant because I’m susceptible to infections that others can easily fight off. I’ve gotten staph infections three times from small cuts on my legs. And despite getting a flu shot, I recently contracted a bad case of influenza that turned into pneumonia, landing me in the hospital for two weeks.

It’s impossible to avoid germs entirely, but I carry hand sanitizer, try to avoid crowds (working at home helps on that score), and I make sure my vaccinations are up to date. I get my lab tests done and schedule doctor visits every three months.

Managing two chronic conditions is time-consuming and sometimes feels overwhelming. Traveling is especially daunting when you need to devote much of your carry-on space to a small pharmacy’s worth of medications and a diabetes test kit and syringes. I’m fatigued sometimes, and experience bothersome symptoms like itchy rashes and a mysterious itch without a rash that my doctors have yet to figure out.

Do I wish I didn’t have to deal with all of this? Of course I do. I hope that one day there will be cures for both lupus and diabetes. But until there are, I’m going to live my life — and live it well — with both.

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