Corticosteroids, also called steroids, are a mainstay in the fight against lupus. Corticosteroids are actually hormonal drugs that behave like the body’s own adrenal gland hormone adrenaline. These synthetic versions are very powerful and the doses given are much greater than the body can produce on its own. Don't confuse corticosteroids with the anabolic steroids often abused by athletes. Corticosteroids affect lupus because they suppress the overactive immune system and inflammation contributing to the flares that may cause tissue damage. Unfortunately, these strong drugs have side effects and consequences that all lupus patients must discuss with their physicians before starting therapy. An immunosuppressed patient often suffers infections, such as strep throat, UTIs, or even a reactivated infection like herpes (shingles) or TB. There are many side effects of corticosteroids including high blood pressure, calcium loss, GI irritation and ulcers (thrush/ yeast infections), delayed wound healing, menstrual irregularities, increased appetite and weight gain, hair growth, especially on arms, face and legs, fat deposits on face and upper body (Also called “moonface” and “buffalo hump”). Long term use and high doses can lead to some secondary health conditions such as hypertension, osteoporosis, exogenic Cushing's syndrome, cataracts, glaucoma, and even diabetes.
While high doses or long-term therapy increase the risk of side effects, stopping therapy too abruptly carries its own dangers. I can’t stress this enough: NEVER stop taking any form of corticosteroids without discussing it with your physician first! While you are taking corticosteroids, your body’s adrenal gland, realizing that there are plenty of hormones around, stops making the usual amounts of cortisone that it usually does. If you stop taking those steroids suddenly, the adrenal gland won’t have time to immediately start up and make enough to keep your body functioning and you can suffer acute adrenal insufficiency, a serious and potentially fatal development. If the steroids aren’t weaned off slowly over a period of time, you run the risk of lupus flares or worsening symptoms. Additionally, if a person on long-term steroid therapy is going to undergo surgery or childbirth, or has any sort of trauma, they may need additional doses to compensate for the stress to the body.
It’s important for anyone undergoing corticosteroid therapy to discuss any questions or concerns with her physician both before and during the therapy. As tempting as it might be for the experienced lupie to "juggle" her own doses, it’s a very risky proposition, and it’s better to talk honestly with your docs in order to avoid a dangerous situation. Remember that you’re always better off knowing more about your available treatments, and that knowledge is power. Get the information that you need to be an informed patient advocate for yourself!