Steroids….The necessary evil

No matter what kind of autoimmune disease you have, I’m sure there has been a time or two that you have had to go on steroids. I am currently on steroids and have been for the past couple of months. I like to call steroids the necessary evil, because we need them to feel better but boy do they have some side effects! Some obvious and some not so obvious. So how to steroids help us, how do they work,and what are the side effects? These are all typical questions people want to know when taking steroids, so I’m going to try and answer some of those for you. Please keep in mind, I’m not a doctor, so always consult with your doctor if you have any questions about your treatment. Everyone/disease is different and not everyone experiences side effects when on steroids. This information is all based on my research as well as my own personal experience with steroids.

What are Corticosteroids and how do they work?

Corticosteroids, also referred to as steroids, are a class of drugs that are used to treat immunological, inflammatory and allergic diseases. Steroids mimic the effects of the hormone cortisone, a close relative of cortisol, which your adrenal glands(sit on top of the kidneys) produce naturally as an anti-inflammatory hormone. When taking steroids doses that exceed your body’s normal levels, they suppress inflammation. Inflammation is the body’s natural response to injury, infection, and to any kind of foreign substance. With some autoimmune diseases, the immune system does not function properly and the inflammation response is to attack your own body’s tissues causing stiffness, swelling, pain and tenderness in certain parts of the body. Corticosteroids also suppress the immune system, which can help control diseases that have over active immune systems, such as Lupus. They reduce the activity of your immune system by affecting your white blood cells, which are the cells that fight infections. These steroids are different from anabolic steroids which are used to enhance muscle strength.
The most common steroid prescribed is called prednisone. Prednisone is used to treat Rheumatoid Arthritis, Psoriatic Arthritis, Polymyalgia Rheumatica, SLE Lupus, vasculitis, and many other diseases other than arthritis. Prednisone works by suppressing the body’s immune system as well as reducing inflammation. Prednisone comes in several different strengths such as 1,5,20 or 50 mg doses. They can be taken anywhere from once a day to several times a day, depending on your body’s needs. Usually a low dose of prednisone is 7.5 mg per day or less, a medium dose is between 7.5-30 mg per day and high dose is more than 30 mg per day. There are other types of steroids than prednisone. Methylprednisolone(Solu-Medrol) is given IV and usually given in higher doses over a couple of days. I was given 120 mg of Solu-Medrol when I was in the hospital for pneumonia and Lupus pneumonitis. I’ve also gotten 60 mg of Decadron(dexamethasone) IV when I was in a pretty bad flare over the course of several weeks. Both of these are known as “pulse dosing” since they are given of a couple of days. Other forms of steroid medications are hydrocortisone, methylprednisolone(Medrol) dose packs or just pill form (which is what I take daily) and dexamethasone(Decadron) tablets. All these steroids vary in potency. For example, hydrocortisone is weaker than prednisone, methylprednisolone is stronger than prednisone and dexamethasone is very potent! It’s best to take your steroids first thing in the morning because this mimics what your body does naturally. Our highest level of cortisol is first thing in the morning when we rise and slowly drops off as the day progresses. It should be at it’s lowest at bedtime which is how we fall asleep. You can see why steroids can keep you up at night because when cortisol levels should be at their lowest, but levels are higher than normal, you can’t sleep!

So, what are the side effects of steroids?

Side effects differ for everyone and it typically has to do with the dose and the length of time you take the steroids. If you have taken higher doses for a long period of time, it is more likely you may experience the side effects than a short course of low dose steroids. Here are the most common side effects of steroids.

Short term side effects- Mood swings, increased appetite which may lead to weight gain, swelling/weight gain of the face, back and abdomen, fluid retention causing swelling in your lower legs, high blood pressure, blurry vision, increased risk of infections, high blood pressure, increase in blood sugars sometimes resulting in diabetes, alterations in menstrual cycle, nausea/indigestion/gastritis(distended stomach).

Long term side effects- Clouding of the lens in one or both eyes(cataracts), thinning bones(osteoporosis), suppressed adrenal gland hormone production, thin skin, bruising and slower wound healing, increase in acne and hair growth, elevated pressure in the eyes(glaucoma), muscle weakness and premature atherosclerosis(narrowing of the blood vessels by cholesterol(fat) deposits.

Like I said before, not everyone will experience any or all of these side effects. Some of them are more severe and more unlikely than likely to happen, but it’s good to be as informed as possible. If you experience any of these side effects, you should talk to your doctor about it. The most important thing to remember is NEVER STOP YOUR STEROIDS ABRUPTLY!! This could lead to very serious side effects and steroids should be tapered by about 5 mg every 7-10 days. This way your adrenal glands will have time to recover and start producing more of their natural steroid hormones on their own.

How to reduce some of the side effects of steroids-

One of the most noticeable side effects of steroids is the weight gain. The first thing I noticed was my marshmallow looking face, my stomach looked like I was about 4 months pregnant and my bra’s wouldn’t fit because of the increased fat on my back. Some people also experience increased appetite which obviously can cause weight gain. While taking steroids, your cholesterol, triglyceride and blood sugar levels may increase. Therefore, it is very important to follow a healthy diet and not increase your calorie intake. I’m not one for counting calories, so don’t think that is what I’m saying…it’s important if you do experience increased appetite, try to keep your hands out of the chip and cookie bag and substitute for something healthier. I know this is easier said than done, but I have found, if I don’t have it in my house, I’m not enticed to eat it. Try and keep vegetables with hummus(not ranch) and lower sugar fruit like all types of berries around the house to snack on when the hunger pangs kick in. It’s also important to exercise not just while on steroids but especially when on steroids. Remember, steroids can cause muscle weakness as well as weaken your bones, so it’s important to stay as active as possible to help maintain strong muscles and bones! The infections that most worry doctors are kidney infections, a type of skin infection called cellulitis, urinary tract infections and pneumonia. Therefore it is important to be on the lookout for any changes in your health even if you are not running a fever. If these infections go untreated, they could enter the bloodstream and pose an even bigger threat, so it is important the you call your doctor at the first sign of illness or infection. It is also recommended not to take any vaccines that have a live virus such as FluMist, smallpox or shingles vaccine. Once again, if you feel you need these vaccines and your are on steroids, please discuss this with your doctor first.

I hope you found this information helpful and understand a little better about steroids and why we have to take them. Like I said before, I call them the necessary evil because we need them to feel better but as you can see, they have some nasty side effects. I can say I have personally experienced some of these side effects and they are not any fun. The good news is, many(if not most) of these side effects go away after getting off the steroids! See….there is always light at the end of the tunnel!

I hope you have a great week and take care of yourself!!
XOXO-Lani