What should we know about IBD medications?

Remembering medications is important

One question people ask me is, “Do I have to take my medicine everyday?” The answer to that is always yes. It’s been shown in many studies that children and adults who have IBD that those who are compulsive about taking their medications do better than those who don’t always take their medications. The relapse rate is much lower, and the remissions last much longer. That is not only from my personal experience as a doctor; it is actually documented by clinical studies and statistics.

So we ask the child to take their medicines regularly, but also to report, honestly, if they’re not. And we do that because there is really strong information out there that it’s good for you to take your meds. People want to do it, but life sometimes makes it hard for them to do it. There are a number of factors that interfere with children remembering or taking their medications, because there is so much going on in their lives. They may have to get up early to go to school or catch the school bus, they may have to stay late at school in the afternoon because both parents are working, they may get home and have chores to do, there may be a lot of activity in the home, especially if there are other children whose needs need to be attended to. And some parents work at night, so there is only one parent home. We have to try to get the medication schedule for each child suited to each child’s life, so that we can avoid, as much as possible, a child missing doses of their meds.

Most families are very good about having the child take their meds. Many families have these tackle boxes that are identified for morning, noon, afternoon, bedtime and they set them out each day. Then the child or the parent will set out the whole box for the next week. It becomes sort of a habit that they’ll do that on Sunday before the week starts; they fill the tackle box so that the meds are all set for the next week.

Richard Grand, MD, Director Emeritus, IBD Program


Common Medication Issues and Questions

I think that one of the main things that we find out when talking to kids and families is that it’s hard to remember to take medications every day. Kids are busy, so sometimes we have to work with a family to figure out the most likely way that we can have them take their medicines. What I find is that it can be really hard for children to take medicines that are prescribed three times a day. Now, a lot of times we can make that twice a day instead, but not until we have a dialogue with the family and they feel comfortable saying to us that 5 out of 7 days a week the afternoon dose is missed. I think families need to feel permission to admit that, and know that it doesn’t mean that they are bad patients. With little ones, sometimes they’re not able to take their medicines at first, so we work with them to teach them how to swallow pills, or we give them medicine to crush and mix into a liquid so that they can take it that way. Also, people are always worried about side effects. With Prednisone, people are worried about facial swelling and that kind of thing. When families go to a pharmacy and pick up their drugs, they get a list of the five thousand side effects ever recorded. I think that what I try to do is to focus on the things that we see the most often and the things to really be concerned about. For example, if we’re starting a child on 6MP, I’ll talk to them about how they may have some nausea, and if they do they should call. Some of the other side effects that may occur they can’t pick up on, like liver irritation or a low white blood cell count. With Prednisone, we really want to talk to people, if they’re going to be on it long term, what their weight and appetite are going to be like, and about acne. But also to talk about how important it is to come down on the medicine slowly.

Lori Hartigan, RN, Former Clinical Coordinator, IBD Program


Explaining Side Effects

Every medicine brings with it slightly different side effects. With Prednisone, they are fairly straightforward. In the beginning, it will puff out your cheeks and make you hungry. It will make you feel a lot better, but it may make you moody and may make it hard to sleep. Those are the things we worry about short term; long term, we worry about weakening of the bones and decreased bone density. That’s really the primary concern; there are some others like blood pressure, but for the most part those are the concerns for Prednisone. We also like to emphasize that we use it for as short a time as possible, and if things seem to be under control, then your doses will come down quickly. The best way to use it is to use a lot right up front as opposed to using a little bit here and there. Another medicine we use is sulfasalazine, which can sometimes cause a skin rash, and it can make you sensitive to the sun. The other drug we use is a drug called 6MP, and it is an immunosuppressant. There we’re worried about lowering of the blood count, abnormal pancreas inflammation, pancreatitis and infections, and a questionable possibility of lymphoma because it’s something that you might worry about– there doesn’t seem to be a lot of it, but we always like to talk about it anyway. Those are our big three: Prednisone, sulfasalazine, and 6MP.

Athos Bousvaros, MD, Associate Director, IBD Program



Alternative Therapies

I think that the side effects of medications are a very big concern, and that has led a lot of families to look for alternative, non-conventional therapies. I have to explain to them that some of those therapies have some bad side effects as well; at least standard medications have been studied, and we know what the side effects are.

Alan Leichtner, MD, Former Chief of the Division of Gastroenterology and Nutrition