Making Lupus Visible: The hard truth about steroids

“The side effects of the steroids used by lupus patients can be complete diseases for other people,’ says Mrs. Emma Danso, the Executive Director of Oyemam Autoimmune Foundation.

Findings of a global survey on steroid use by lupus patients indicate that diabetes, heart disease, organ failure, osteoporosis, and vision impairment are some of the major side effects of steroid use by lupus patients.

The survey was conducted by the World Lupus Federation from February to March 2024 to 7,741 patients from about 108 countries including Ghana. Focused on the extent and impacts of steroid use for the care of lupus, the results confirmed the urgent need for both awareness of steroid side effects and ongoing research for more treatments and, ultimately, a cure for lupus.

In an address to observe World Lupus Day which is celebrated on May 10 each year, Mrs. Danso shared some of the responses of patients from the survey to buttress the need for more awareness and supportive policy on lupus in Ghana. While 90% of patients said that their lupus symptoms improved with steroid use, 95% of respondents reported at least one side effect. Also, 6 in 10 respondents reported experiencing at least one major side effect of using steroids; this was also true for 7 in 10 respondents taking steroids for more than five years.

A survey respondent stated, “I absolutely hate the side effects of taking steroids, but unfortunately, I don’t feel there’s a better option out there when a bad flare comes on.”

Other side effects which stood out in the findings include weight gain, mood swings, appearance changes, insomnia, increased appetite, and hair loss.

“It is a hard reality to admit that the very medication supposed to help correct the debilitating handwritings of lupus on a patient can cause more and/or new problems as side effects. This dilemma was a huge personal challenge for years,” she said.

Mrs. Danso said that lupus is a public health concern that is yet to receive the support it deserves in Ghana. The awareness is low, and many people continue to endure health challenges undiagnosed. For diagnosed patients also, lupus healthcare is very expensive. The easy option is to take steroids in addition to other options for treatment.

Many lupus patients take steroids as part of their treatment even though the aim of lupus treatment is targeted towards elimination of steroid use. In Ghana, the minimum dosage of prednisolone, the common steroid prescribed for patients is 5mg. This implies that even when a patient is in remission or doing well, the patient must be on a maintenance dose of 5mg daily; this is a high dose compared to developed countries where patients have access to lower doses.

The Executive Director of Oyemam Autoimmune Foundation appealed to the relevant authorities to make 1mg and 2mg prednisolone tablets available to patients in Ghana. She explained that most patients who use steroids default in their treatment because of the fear of the potential side effects. However, until better and affordable options are available, lupus patients will continue to take steroids, a necessary evil.

Lupus is a chronic autoimmune disease that causes a person’s immune system to fight its own healthy organs and tissues. Symptoms include fatigue, skin problems, oral or nasal ulcers, arthritis, serositis as well as other disorders involving heart, kidney, lungs, nervous system. Causes of lupus include stress, hormones, genes, infections, and taking some medications.

There is currently no cure for lupus, but it can be well managed if diagnosed early and appropriate treatment is adhered to. Lupus is an unpredictable disease that can attack anyone at any time and hence awareness and supportive policies are critical. The impact of lupus transcends patients and their immediate families. It is, therefore, imperative that everyone becomes aware of lupus and the reality of autoimmunity in Ghana.

“It is always business as usual until that seemingly mild headache, uneasiness, infection or skin rash evolves into an incurable cruel disease like lupus. Though it may sound like an exaggeration, that is the reality about the unpredictability of lupus. For me, it has taken the grace of God, support and community to bounce back and defy the odds. We need all on board to make lupus visible,” she intimated.