Steroids - The Necessary Evil Drug

Well, I have now been off of my Decadron Steroid for one week. I had been on it for a month total including the "taper down". I've decided that steroids suck. No other way of putting it. However, I know they are the necessary evil. Without them things could have been much worse. For those that don't have any clue what I am talking about... I will explain.

Following surgery in the brain, one of the problems that can arise is swelling of the brain. This is a very bad thing in the brain. The brain is in the cranium which is an enclosed hard protective area that does not expand. When you have surgery in other areas of your body, the area can swell and expand as needed. In the head, that can't happen without causing a lot of pressure. In order to make sure this swelling doesn't occur, patients are given a steroid following surgery.

Steroids are notorious for causing lots of various side effects. Some of the effects I was warned about by other brain tumor surgery patients were severe mood swings, 'roid rage (where you would just get into a rage of anger for no apparent reason), weight gain, the need to constantly eat, among other things. I was pretty lucky and didn't experience most of these symptoms while on the steroid. I did experience others, however, including joint weakness, insomnia, major acne, and total loss of taste. Reading and researching on the internet now, I see there is a huge list of other side effects that are pretty nasty that can be experienced while on the steroids.

I was prepared for the steroids to really suck but what I was not prepared for was how lousy I would feel when coming off of them. Apparently it is not uncommon for some to have symptoms caused from being off of them. Withdrawal if you will. Anyway, this week I have had major problems with swelling and potassium deficiency. As for the swelling, I have what they call moon face at the moment. My cheeks are puffed out and you can't make out any of my features or feel my bones. I also have a "hump" in the back of my neck from fluid build-up. Furthermore, I am getting intermittent swelling in my feet and hands. However, the most bothersome is that I am getting swelling in my stomach. Yesterday, I literally looked like I was 9 months pregnant. My stomach had swollen to the point that you couldn't even see my stretch marks from my previous pregnancy because the skin was stretched so tight. I put on 8 pounds in 6 hours from the fluid gain. Basically because it is from the steroids, it just has to run its course. No one seems worried about it but it is soooooo uncomfortable.

The other issue that has arisen from the combination of fluid retention, various drugs that were in my body, and who knows what is a potassium deficiency that was causing really painful cramps and pains in my legs. Luckily, increasing the potassium rich foods I eat has helped that so far. We are waiting on my bloodwork to see if there is anything else that is out of whack but so far that is the plan.

So I guess the purpose of this post is that I realize steroids are necessary in certain situations but dang they suck. Oh and worst of all, I've actually found places where people stated they had the swelling like I have for 3-6 months after coming off of them. Luckily, they were on the steroids much longer than I was so hopefully that won't happen with me. I know it sucks when you feel worse at the five week mark than you did in the first week after brain surgery. With any luck, I'll be able to go a very long time without having to deal with steroids again. Also, now that I know, maybe we can try some other methods of tapering to try to minimize the "withdrawal" symptoms. Not sure if it will happen or not but it's worth a shot.