There’s a little game I (and others) play…”symptom or side effect?”
Being on various medications while dealing with a new disease causes me to question everything that I am experiencing. It is sometimes hard to tell if what I am feeling is caused by my disease or by my prescriptions. I am on various medications that cause a large range of side effects. One of the biggest culprits is the Prednisolone I am currently taking.
What is Predniso(lo)ne?
During active time periods (flare-ups) of Ulcerative Colitis, one of the main ways to calm the bowels is through corticosteroids (anti-inflammatories), which decrease the inflammation occurring in the bowels during a flare-up. The common form of these corticosteroids prescribed to those with IBD is Prednisone or Prednisolone. The side effects of the corticosteroids include, but are not limited to:
- appetite increase, resulting in weight gain
- mood swings
- rounding of the face (known as moon face)
- struggles concentrating
- weakening of bones
The corticosteroids are fast acting drugs that can help to reduce a flare up within days. Normally, these drugs are only prescribed for short periods of time (2-6 days), but within the IBD community the can be prescribed for anywhere from a month to longer than year. I began 25mg of Prednisone orally over a month ago. I transitioned to 80mg of Methylprednisolone intravenously while in the hospital. Before leaving the hospital, I began taking 40mg of Prednisolone orally. As Prednisolone reduces or stops the natural production of cortisol by the body, the medication should not be stopped abruptly, but instead the dosage should be reduced over time. The process of reducing the dose over time is called “tapering off” of steroids, which is what I am currently doing.
The side effects that have caused me the most problems recently are the cravings/appetite increase and the mood swings. The insomnia that I deal with is a struggle some nights, but mostly, I am just constantly tired and live with it. I used to get about four hours of sleep a night before my diagnosis, so I can manage with little sleep and don’t mind being awake before the sun (can’t burn daylight). I am currently taking Calcium and Vitamin D supplements to offset the weakening of bones that steroids cause. I just try power through moments of brain fog (lack of concentration) and hope it doesn’t cause too terrible damage to anything/anyone. I think the most potential damage I could’ve caused due to brain fog was the time I put the milk in the fridge on its side without the top on it. Luckily the milk was low and did not spill, especially because it took about five minutes for the boyfriend and I to find what I did with the top.
Cravings & Weight Gain/Control
Steroids change your metabolism and the way the body distributes fat. Fat gained from predniso(lo)ne is distributed around the abdomen, in the face (moon face), and on the back of the neck. Steroids also cause the body to retain sodium and lose potassium. The combination of retaining sodium and losing potassium can cause weight gain, bloating, and fluid retention. When taking a high dose predniso(lo)ne, it is best to reduce the amount of processed food eaten, reduce sodium intake, and to control the amount of daily calories consumed. As many people who are prescribed steroids for long periods of time often have a condition that limits their physical activity, it is especially important to be cautious about the amount of food one consumes.
As my Ulcerative Colitis caused me to lose quite a bit of weight (34 lbs) in two months as well as have no appetite, I welcomed the cravings that the steroids were giving me…in the beginning. However, at this moment, these cravings are brutal! They make me want to eat everything in the kitchen. Well, not everything, just all the carbs: waffles, bagels, bread, pasta, ice cream, etc. Since leaving the hospital, I have gained about half of the weight I lost. I’m sitting fairly comfortably (and healthy) at 170lbs, but there is definitely more fat around my tummy and I have severe moon face at the moment.
I know that I have to control these ridiculous cravings, which is quite difficult for me. I have always struggled with controlling my cravings and stopping when I am full. When I was a kid, I would eat slices of bread while making myself two PB&J sandwiches (PB&J is life). In fifth grade, I weighed 180lbs and I definitely was not muscular. It took me an extremely long time to learn how to stop myself and understand that my body is not actually hungry. Before this diagnosis, there were still times I struggled to stop at a few Oreos and not eat an entire container. Needless to say, these cravings are driving me insane.
So, how do I stop myself from devouring four waffles drenched in syrup (current craving)? WATER! If I know that I am not actually hungry, but instead just craving processed deliciousness, I drink some water. Sometimes when you feel hungry, you’re actually thirsty, right? If I am still hungry or craving something, I reach for the fresh fruit in my fridge. The reasons I reach for fresh fruits (or vegetables): low calories, full of nutrients, and low sodium. Additionally, choosing fruits and vegetables that are rich in potassium will help to offset the side effect of fat gain and fat redistribution. My main goal in food consumption is to avoid sugary foods or those foods labeled as “junk foods” as they are often heavily processed, full of empty calories, and loaded with sodium. Therefore, in addition to practicing healthy habits when it comes to cravings, I also try to watch what I consume throughout the day. Lean meats, low-fat dairy products, low sodium products, and fresh/frozen fruits and vegetables make up my daily intake of calories.
Of course, another important aspect of controlling weight gain is exercise, which I have not been able to do. Because of this, I have to be very conscience of my calorie intake lately. With that being said, Monday is the day that I am going to attempt returning to my regularly scheduled gym program. The anxiety about trying to workout again is quite real, but one day at a time, right? Hopefully as I return to exercising and continue to decrease my steroid dosage, I will be able to not only control the weight gain, but begin to lose the bit of fat I have recently gained.
In all seriousness, steroid rage is a real thing! In doses over 30mg a day, steroids can severely impact your mood. The drugs effect people differently; some experience depression, some constantly feel an “up,” and others are “up and down” the entire time. Additionally, irritability and anxiousness can accompany taking predniso(lo)ne. Not being prepared for or aware of the mood changes that may occur can cause one to feel scared and alone when they do occur. Also, mood changes can impact relationships with friends, family members, and coworkers. Explaining the side effects of predniso(lo)ne helped me to prepare my those closest to me for any bouts of anger, anxiety, depression, or irritability that I may experience. It is important to me that they understand how the drugs may impact me as my mood and my outward projection could bother them.
There have been moments where I suddenly wanted to strangle my sister for a small comment. At other times, I have felt drained and unable to believe I have a disease, which left me upset and on the couch. Just yesterday, I started crying while building the very desk I am currently using. The irritability I sometimes feel overwhelms me to the point where I take it out on my boyfriend. The hardest part about the altering of my mood is that the emotions feel authentic; they feel like they are genuinely mine and it makes me feel extremely uncomfortable at times. I find myself out of sorts over things that normally do not bother or are incredibly small in the grand scheme of things. I am a big advocate for feeling your emotions and not letting anyone tell you that you have no right to feel things. However, I know that some of these emotions and thoughts I have are not me; they are not who I am. Not being able to control my emotions (irritability or rage) in a moment and then realizing that I may have lashed out is incredibly frustrating, which just causes me to be upset about something else. It’s a never ending cycle.
Withdraws from Predniso(lo)ne are at a high chance of occurring the longer the treatment, but can also occur during short-term treatments. When taking predniso(lo)ne for three weeks or longer, the body lowers the amount of cortisol it produces because it begins using the predniso(lo)ne as cortisol. The “tapering off” of steroids is necessary to give the body ample time to readjust its cortisol production.
The withdraws to Predniso(lo)ne are not how society typically thinks of withdraws. There are not crazy cravings for the steroids as it is not an addictive drug, but reducing the dosage or stopping completely still changes the body physically. Some withdraw symptoms include severe fatigue, weakness, joint pain, and body aches. The symptoms of withdraw can last from a few weeks to a year, depending on how long one was on the steroid treatment as well as the strength of the dose. Other than tapering off the steroids at a slower rate, there are actions that can be taken to reduce the withdraw symptoms, which include the following: getting adequate sleep, eating healthily, reducing alcohol and caffeine, and avoiding stressful situations.
I have been taking the steroids for well over a month at a “high” dose. As I am starting to reduce my dosage at rather “quick speed,” I am beginning to feel slight withdraw, which is something I did not know was going to occur until yesterday. I had been feeling really crappy after dropping my dosage for the second time and then read on Instagram about Prednisone withdraws. Therefore, I did quite a bit of reading on the subject to inform myself and prepare myself for the road ahead. Other than general blah-ness, the only withdraw symptoms I seem to feeling is fatigue. I notice that I have been more fatigued these past few days than I normally am.
There is light at the end of this crazy, exhausting, carb eating, extremely emotional tunnel as I am down to 20mg a day of Prednisolone and will hopefully be completely done with these little bastards in three weeks.