Caregivers

Caring for Someone with MDS

When you are taking care of someone with myelodysplastic syndromes (MDS), there is a lot to remember. You may be dealing with a lot of different medicines. Your loved one may have frequent doctor's appointments. MDS can be a painful experience — not only for the one who has it, but for the caregiver(s) as well.

If your loved one receives blood transfusions, you may know from your own experience about some of the benefits. Blood transfusions can help people with MDS feel better and have more energy.

What You Need to Know About Chronic Iron Overload Due to Blood Transfusions

If your loved one gets blood transfusions often, he or she may be at risk for chronic iron overload. This site provides information that will help you to learn more about EXJADE® (deferasirox) Tablets for Oral Suspension, and to understand chronic iron overload due to blood transfusions. Make sure to read:

  • Iron and Your Body — explains why blood transfusions are important and how they can result in chronic iron overload
  • Ask Your Doctor — questions you may want to discuss with your doctor
  • Patient Experiences — read what others are saying about their experiences with EXJADE
  • Related Links — learn more about chronic iron overload due to blood transfusions and myelodysplastic syndrome

How EXJADE Can Help

EXJADE is indicated for chronic iron overload due to blood transfusions (transfusional hemosiderosis) in patients 2 years of age and older. Further studies are being performed to determine the long-term benefits and risks of EXJADE. EXJADE does not require the use of pumps or infusions.

EXJADE is a prescription medicine that helps remove excess iron. It is taken orally, once a day, mixed with orange juice, apple juice, or water.

To be effective, EXJADE must be taken every day. EXJADE is available by prescription only.

Easy to Take

You may print these instructions to keep them handy. Take EXJADE once daily on an empty stomach. Then wait 30 minutes before you eat anything.

  1. Step 1

    Drop EXJADE tablet(s) into a glass of orange juice, apple juice, or water, using the amount of liquid as directed by your healthcare provider.† Do not chew or swallow the tablets whole or take EXJADE at the same time with aluminum-containing antacids (for example, Maalox®*).

  2. Step 2

    Stir until the tablet or tablets are evenly mixed (about 3 minutes). The EXJADE mixture may become thick in consistency and is generally tasteless and odorless.

  3. Step 3

    Drink. Add liquid to any remaining part of EXJADE in the glass or on the stirrer and drink.

†Doses of <1 gram should be dispersed (mixed) in 3.7 ounces of liquid and doses ≥1 gram should be dispersed in 7.0 ounces of liquid.

*Maalox® is a registered trademark of Novartis Consumer Health, Inc.

Finding Support and Resources

A great deal of your energy may be focused on the person you are caring for. But to be an effective caregiver, it is important to take care of your own needs as well. Taking time out each day, talking to someone who can give you understanding and empathy, connecting with other caregivers — these can all make a big difference.

To find support and resources on the web, you may want to visit these sites:

  • The MDS Foundation
    mds-foundation.org
    Select the "Patient Information" tab to find frequently updated treatment information, patient testimonials, and articles.
  • Aplastic Anemia & MDS International Foundation, Inc. (AAMDS)
    aamds.org
    To find support groups, financial resources, and patient and family conference information, select the "Support & Hope" tab.
  • The Leukemia and Lymphoma Society (LLS)
    leukemia.org/hm_lls
    Select "Find Support" to find family support groups, call center numbers, and live online chat, plus resources for dealing with finances, grief, and end-of-life challenges and concerns.
  • National Marrow Donor Program (NMDP)
    marrow.org
    For caregivers to patients undergoing a bone marrow transplant, find tips, support, stories, and more in the "Patient Resources" section.

The websites listed on this page are maintained by third parties over whom Novartis Pharmaceuticals Corporation has no control. As such, Novartis Pharmaceuticals Corporation makes no representation as to the accuracy, completeness, adequacy, or any other aspect of the information contained on such sites.


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In Their Own Words

Read what others are saying about EXJADE.

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EXJADE is indicated for the treatment of chronic iron overload due to blood transfusions (transfusional hemosiderosis) in patients 2 years and older.

Further studies are being performed to determine the long-term benefits and risks of EXJADE.

Important safety information about EXJADE

People who are allergic to EXJADE or any ingredient of EXJADE should not take EXJADE.

Before you start EXJADE, your doctor will give you blood tests, because EXJADE may affect your kidneys, liver, or blood. The blood tests will be performed every month to check your kidney and liver function, your serum ferritin levels, and your blood count. If you are at increased risk of complications because you have a pre-existing kidney condition, are elderly, have multiple medical conditions, or are taking medicine that affects your kidneys, your doctor will give you a blood test every week for the first month you are taking EXJADE or if your dose has changed, and then every month after that. Your doctor may also collect urine samples monthly.

Some patients developed severe kidney problems, in some cases fatal, while on EXJADE. Most of the fatalities occurred in patients who were very ill because of their disease. There may be increased risk of complications for patients who already have a kidney condition, are elderly, have multiple medical conditions, or take medicine that affects kidney function.

Some patients developed severe liver problems, in some cases fatal, while on EXJADE. Many of these patients were greater than 55 years of age and/or had multiple medical conditions already affecting their liver.

Some patients developed blood disorders, in some cases fatal, while on EXJADE therapy, but it is not known whether this was a result of EXJADE therapy or other causes, as most of these patients already had diseases affecting their blood.

Serious allergic reactions (which include swelling of the throat) have been reported in patients taking EXJADE, usually within the first month of treatment. If reactions are severe, stop taking EXJADE and contact your doctor immediately.

You may also receive a hearing or vision test prior to receiving EXJADE and yearly thereafter. Your dose of EXJADE may be changed if needed based on the results of these tests.

Should you develop swelling of the throat, a severe rash, or any hearing problems or vision disturbances, please contact your doctor.

EXJADE should be taken once daily on an empty stomach, at least 30 minutes prior to food, preferably at the same time every day.

EXJADE should not be chewed or swallowed whole, and should not be taken at the same time as aluminum-containing antacids (for example, Maalox®).

The most commonly reported side effects related to EXJADE in clinical trials were mainly nausea, vomiting, diarrhea, stomach pain, fever, cough, headache, increases in kidney lab values, and skin rash. These side effects were mild to moderate in severity. If you experience diarrhea or vomiting you should ensure that you continue to drink fluids.

Please see the full prescribing information.