People being treated long-term with medications for chronic diseases, such
as inflammatory bowel disease (IBD), often don't like taking their medicine.
You may feel like it's a constant reminder that you have a disease. It can
be hard to remember to take medicine, especially when it is inconvenient.
You may feel like there are too many pills and worry about side effects
or the long-term consequences of taking medicine all of the time. You may
not understand why you have to take medicine when you feel just fine, and
you may want to take medicine only when you have symptoms. Other people
share these same concerns. You're not alone. Approximately one million people
in America have IBD. Many take daily medication to control symptoms. Millions
of people need to take medicine everyday for other conditions too, sometimes
several times a day. You probably have family members taking daily medication
for high blood pressure, arthritis, or other conditions.
It's certainly understand-able to feel unhappy about taking medicine when
you feel well, but continuing to take your medicine is one of the most important
steps you can take to stay well. When I ask my patients
who are successful taking their medicine long-term how they do it, they
tell me that they remind themselves daily that they are taking necessary
steps to remain healthy and in control of their future.
Currently, there's no cure for IBD (ulcerative colitis and Crohn's disease)
other than removing the colon for ulcerative colitis. Fortunately, we have
medicines that do a good job treating the symptoms of IBD for most people.
These medicines can improve the quality of your life. They can help you
stay in school or go to work feeling well. They can help you maintain an
active lifestyle and do the things you enjoy whether it's going to the movies
or playing your favorite sport. These medicines not only treat active symptoms,
they can also help prevent relapses. Without consistent treatment, relapses
can occur more frequently and increase in severity. It's very important,
however, to take the medicines just as your doctor has prescribed.
A recent study of IBD patients showed that people who did not take their
medication properly were about 3 times more likely to suffer a relapse than
those who took their medications regularly as prescribed. In another study,
12 patients experienced a relapse, but all 12 did not take their medicine
properly.
IBD is a disease in which every patient may not experience the same symptoms.
Not everyone needs the same dosage of medication, so don't change how you
take your medicine because someone you know takes their medication differently.
Medication is prescribed based on the symptoms you are experiencing. If
you feel that you are taking more pills than you can handle or if you are
having unpleasant symptoms, be honest with your doctor and ask if there's
another way to take your medicine. Do not change how you take your medicine
without talking to your doctor.
If you have questions about how to take your medicine, be sure to call your
doctor. Your pharmacist may also be able to explain how to use the specific
medicine your doctor has prescribed.
Sometimes it can be hard to tell the difference between a side effect and
a symptom. It's important to keep your appointments and to honestly discuss
your symptoms and the way you have been using your medicine with your doctor.
Taking charge of your health by taking your medicine responsibly and communicating
any concerns you have with your doctor before making any changes is essential
to maintaining progress and preventing relapse.
If you have IBD, whether it's ulcerative colitis or Crohn's disease, it's
likely that you are taking medication for treatment. Some medicines are
used only when you have active symptoms and other may be used when you have active symptoms and when you
are in remission (that is, you no longer have symptoms) but
still need medicine to prevent a relapse.
Steroid compounds (such as Celestone®, Cortenema®,
Cortifoam®, Cortrosyn®, Deltasone®,
Entocort™, Medrol® and Pediapred®)
and antibiotics (such as Cipro® and Flagyl®)
are sometimes used when people have active symptoms. These are very potent
medications and can have unpleasant side effects for some people.
Even though they are very effective, they can be harmful if not taken as
prescribed. Steroids are not drugs that can be stopped "cold turkey."
They must be tapered slowly. Just stopping them could cause very low blood
pressure, irregular heart beats, and even shock. It could even be fatal.
If you taper them too quickly you could experience very unpleasant withdrawal
symptoms and your IBD could flare up. Don't attempt to taper yourself off
of steroids without the assistance of your doctor. You may also have heard
before how important it is to take all of an antibiotic prescription to
prevent germs from becoming resistant to the medicine. It's true. If your
doctor has prescribed an antibiotic, take all of it as prescribed.
The group of drugs called 5-ASAs (such as Asacol®, Azulfidine®,
COLAZAL®, Dipentum®, Pentasa®, and Rowasa®) are very effective
for people with mild to moderate ulcerative colitis. Some 5-ASAs are indicated
by the Food and Drug Administration (FDA) for the treatment of mild to moderate
ulcerative colitis with active disease only and others are indicated for
active disease and in remission to prevent relapse. Relapse can occur sooner
if you take your 5-ASA intermittently or discontinue it too soon. Keep in
mind that it's easier to prevent a flare up than it is to stop one once
it has begun. Of the 5-ASAs, Azulfidine is the oldest and has more side
effects. If you've been taking Azulfidine and are experiencing unpleasant
side effects, ask your doctor if you can try one of the others. The newer
drugs in this class have fewer side effects and are generally well tolerated
by most people.
If you are having trouble remembering to take your medicine, try to think
of strategies that will help you remember. Here are some strategies my patients
have used to help them remember:
- Try to take your medicine at the same time everyday so it becomes
a habit, like brushing your teeth
- Use a medication organizer to arrange your pills according to when
they should be taken
- Set your watch alarm for pill-taking time
- Write it in your date book in a different color so it's hard to miss
- If you have a computer, put a reminder
in your computer's calendar or task schedule or add it to your screensaver
- Keep your medicine in plain view (but out
of the reach of children) so you will always see it
- Put a note where you will always notice
it, like on your coffee maker or your bathroom vanity mirror
- Hire a calling service to give you a daily "wakeup" call
to remind you
- If you have home voicemail, you may be
able to program an "AnswerCall" at the same time each day
- Online services, such as "Mr. Wakeup" will
make free reminder calls to you
- If you use a PDA, set it to chime at the
same time each day
- Ask a friend or family
member who will agree to remind you
- Ask people who take
daily medicine how they do it
It's also important to develop a system to make sure you do not run out of medicine.
- Your
pharmacy may have a reminder program that you can sign up for; some pharmacies will automatically refill prescriptions upon request
- If you use an electronic
or paper planning calendar, each time you refill the prescription write on your calendar
the date you need to call in the refill
- Once you have a stable
medication plan, you may be able to get a long-term supply
- Some health plans permit
a six-month prescription from your physician and will allow you to order three-months
of medicine at one time via the mail at a reduced cost
- Be sure to allow a few
extra days for your pharmacy to get your medicine ready
Working closely with your physician to take charge of your wellness is vital
to maintaining your health and reducing the likelihood of relapse. Faithful
adherence to your medication plan can make a huge difference in your success.
It can be the difference between repeated relapses and progression of the
disease and feeling good most of the time. Your commitment to yourself is
the key.
This information has been reviewed and approved by CCFA's National Scientific Advisory Committee.
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