“What doctors/pharmacists don’t tell you.”
January 3, 2014
It is amazing how frequently the subject of steroids comes up. Just in the last two weeks, three people told me they were on prednisone and they were all irritable about the side effects. One was taking them for sinus problems; another was taking prednisone for arthritis. The third was taking them for an MS flare-up.
They are powerful drugs and are prescribed often for people with and without MS. Why? Because their primary purpose is to reduce inflammation. And inflammation occurs in all parts of the body, and these drugs do help.
But there is much to know about steroids, and unfortunately, the doctor and the pharmacist never tells it all. The first experience with steroids is horrifying to say the least, and creates tremendous confusion and stress. I personally hated them in the beginning, but after I understood my own body’s reactions and the fact that they did work for me, steroids became my friend.
For folks with MS, corticosteroids (“steroids”)—usually Solu-Medrol and prednisone– are used to reduce the duration and severity of a flare-up (or exacerbation, or attack). Solu-Medrol is given intravenously for 3-5 days usually at home (about 1-2 hours per day). Prednisone is given orally usually over a 10-14 day period, beginning with a very high dosage (e.g. 80mg/day works for me) and tapering down the last week to 10 mg. by the last day.
What to know about steroids:
• Again, the purpose of steroids is to reduce inflammation. When the dosage is high, the immune system will become suppressed. Therefore, you want to take all measures to keep your resistance up and your exposure to infections, colds and viruses low. If you currently have an infection or virus causing the flare-up, try to get rid of the infection/sickness before getting on the steroids if possible.
• A very common side effect of steroids is water retention. Eliminate as much salt as you can from your diet while taking them. This goes beyond table salt. Canned, frozen and packaged foods, pickles, condiments, luncheon meats, etc. are loaded with sodium; so avoid these and eat bland and fresh foods. Often, people will get what they call a “moon face”; the face can become full and rounded.
• Appetite usually increases when taking steroids, so stick to snacks like carrot sticks, celery, apples, or unsalted popcorn. The sacrifice of a strict food regime for a maximum of two weeks is well worth the extra pounds you won’t gain and have to worry about later.
• Once you start steroids, follow the complete program and do not just quit taking them. If you do, it can inhibit your adrenal glands from producing the natural amount of cortisol later.
• A universal complaint is insomnia. Speak with your doctor about sleeping pills. Even with a sleeping pill, you may only get four to six hours of sleep. Try to read, do paperwork, or anything that will keep you from dwelling on not sleeping.
• There are many other side effects when taking steroids; the amount, type, duration will be different for everyone. For example, I get supercharged and euphoric when I’m on steroids, especially when they kick in and my symptoms are improving. I also get very constipated. Other frequent complaints include irritability and mood swings. If you are anxious, consider asking your doctor about an anxiety pill to minimize stress.
• For women, it is not proven yet whether steroids affect birth control pills. It is always a good idea to use additional protection while on steroids.
• Try to temper your expectations and not compare yourself to anyone else. Some people respond faster and better than others. Take notes everyday about what is improving, what isn’t, how much… It will help with your next episode. You will learn your own body reactions and patterns as time goes on.
• When a steroid program is finished, a person will often go into drug withdrawal. Symptoms may worsen again, and different side effects can pop up. For me, I get the shakes, anxiety, weepy, acne, some hair loss, sleepy; and my symptoms will be worse than before I even got on the steroids. After my “withdrawal” period, my symptoms will adjust to what will be normal for me; and all of the other side effects from steroids will go away. After having been on steroids on average of twice a year over the course of my MS, I’ve learned what to expect and how to ride it out.
• There are serious side effects to using steroids over a long length of time—like months or even years. These include things such as bone density loss. As always, one needs to weigh the benefits against the positives when taking any drug.
Sometimes, steroids work for a person, and sometimes they don’t. And of course, all people react to a drug differently—both in response to the effectiveness and to the side effects.
All you can do is try. If it works, great; if it doesn’t, well something else will have to be tried to alleviate the problem.