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Prednisone and Corticosteroids for MS: Helpful Tips

It’s surprising how often the topic of steroids comes up. In the last two weeks alone, three people told me they were taking prednisone and were irritable from the side effects. One took them for sinus problems; another was taking prednisone for arthritis. The third was taking them for an MS flare.

They are powerful drugs and are often prescribed for people with and without MS. Because? Because its main purpose is to reduce inflammation. And inflammation occurs in all parts of the body, and these drugs help.

But there’s a lot to know about steroids, and unfortunately, the doctor and pharmacist never tell you everything. The first steroid experience is horrible to say the least and creates tremendous confusion and stress. I personally hated them at first, but after understanding my own body’s reactions and the fact that they worked for me, steroids became my friends.

For people with multiple sclerosis, corticosteroids (“steroids”), usually Solu-Medrol and prednisone, are used to reduce duration and severity of a flare (or exacerbation, or attack). Solu-Medrol is given intravenously over 3 to 5 days, usually at home (about 1 to 2 hours per day). Prednisone is given orally usually over a 10-14 day period, starting with a very high dose (eg 80mg/day works for me) and tapering over the last week to 10mg. for the last day.

What you should know about steroids:

  • Again, the purpose of steroids is to reduce inflammation. When the dose is high, the immune system will be suppressed. So you want to take every step to keep your resistance high and your exposure to infections, colds, and viruses low. If you currently have an infection or a virus causing the outbreak, try to get rid of the infection/disease before starting steroids, if possible.
  • A very common side effect of steroids is fluid 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, deli meats, etc. they are loaded with sodium; so avoid them and eat soft, fresh foods. Often people will get what they call a “moon face”; the face may become full and rounded.
  • Appetite is usually increased when taking steroids, so have snacks like carrot sticks, celery, apples, or unsalted popcorn. The sacrifice of a strict diet for up to two weeks is well worth the extra pounds you won’t gain and have to worry about later.
  • Once you start taking steroids, follow the full schedule and don’t stop taking them. Doing so can inhibit your adrenal glands from producing the natural amount of cortisol later on.
  • A universal complaint is insomnia. Talk to your doctor about sleeping pills. Even with a sleeping pill, you may only get four to six hours of sleep. Try reading, doing paperwork, or anything that keeps you from thinking about not sleeping.
  • There are many other side effects to taking steroids; the amount, type, duration will be different for everyone. For example, I feel supercharged and euphoric when taking steroids, especially when they kick in and my symptoms improve. I am also very constipated. Other frequent complaints include irritability and mood swings. If you’re anxious, consider asking your doctor about an anxiety pill to minimize stress.
  • For women, it has not yet been proven whether steroids affect birth control pills. It is always a good idea to use extra protection while taking steroids.
  • Try to moderate your expectations and don’t compare yourself to anyone else. Some people respond faster and better than others. Take notes every day on what’s improving, what’s not, how much… It’ll help you with your next episode. You will learn your own bodily reactions and patterns as time goes by.
  • When a steroid program ends, a person will often go into drug withdrawal. The symptoms can get worse again and different side effects can appear. For me, I have tremors, anxiety, crying, acne, some hair loss, sleepiness; and my symptoms will be worse than before taking the steroids. After my “withdrawal” period, my symptoms will adjust to what will be normal for me; and all other steroid side effects will go away. Having been taking steroids on average twice a year over the course of my MS, I learned what to expect and how to cope.
  • There are serious side effects from using steroids over a long period of time, such as months or even years. These include things like loss of bone density. As always, one must weigh the benefits against the positives when taking any medication.

Sometimes steroids work for a person and sometimes they don’t. And of course, everyone reacts to a drug differently, both in response to efficacy and side effects.

All you can do is try. If it works, great; if not, well, something else will have to be tried to alleviate the problem.

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