Steroids such as prednisone are a cornerstone in treating inflammation across a range of conditions. They act quickly to ease symptoms like pain, swelling, and breathing difficulties. Yet, while steroids can bring much-needed relief, many patients are worried about the consequences of long-term use.

 

"Patients who are prescribed steroids have a true love-hate relationship with this therapy. They value its ability to work quickly and provide relief, but they fear the side effects and long-term consequences of repeated use," shares Tricha Shivas of the Foundation for Sarcoidosis Research. 

 

This tension shapes every step of the treatment journey, from the first prescription to each follow-up visit.

 

“While steroids can be lifesaving during severe flares, they can also trigger a cascade of unwanted effects, many patients describe them as a therapy of ‘last resort’ due to fear of side effects like weight gain, insomnia, mood swings, skin thinning, and long-term complications such as osteoporosis or adrenal suppression,” explains Karen Rance, Chief Medical Officer at GAAPP. 

 

Dependence on steroids can become frustrating when symptoms return as doses are tapered. 

 

“Patients frequently ask about newer treatments that could reduce or eliminate their need for steroids,” notes Karen Rance. “Yet access to alternative therapies remains uneven.” 

 

Stacie Bell of the Lupus Research Alliance observes, “While some patients are able to access alternative therapies, others have shared it is extremely difficult due to high costs, lack of insurance coverage, and limited availability of effective therapies.”

 

"Most patients are left with little to no understanding of what steroids can do to their bodies or how to manage potential side effects. There is a real gap in medication education. Patients need so much more support, including clear explanations about what to expect, guidance on long-term risks, and strategies for safely stopping the medication when the time comes," explains Stephanie Williams, Project Lead at Speak Up for COPD, at GAAPP.

"Community members who have explored Sam have been very positive - one member in particular was brought to tears and said how they felt their struggles were seen and represented. Other members said they wished this type of support had been available earlier in their journey using steroids," notes Stacie Bell. 

 

Moving forward with compassion

If you are concerned about steroid side effects or long-term risks, it helps to start an open dialogue with your healthcare provider. Ask about newer, targeted treatments and whether clinical trials might be appropriate. Remember, you are not alone. Many patients share the same fears, and research continues to advance toward steroid-sparing approaches.

 

By weighing the immediate benefits of steroids against their potential burdens, you and your doctor can work together to devise a treatment plan that suits you.