Related Links

There are many sites on the Internet where you can learn more about myelodysplastic syndrome (MDS), find support groups, and share stories. For specific answers about your health or the health of a loved one, your healthcare provider is always your best resource.

Becoming More Informed

There are several sites that provide information about MDS and blood cancers.

  • Aplastic Anemia & MDS International Foundation, Inc. (AAMDS)
    aamds.org
    The AAMDS is the oldest and largest patient advocate and support organization for bone marrow diseases. Their website provides many educational and support resources, including "Ask the Experts" (find it under the "Disease Information" tab).
  • The Leukemia and Lymphoma Society (LLS)
    leukemia.org/hm_lls
    Dedicated to fighting blood cancers, the LLS provides many resources for patients and healthcare professionals, including news, discussion boards, disease information, and more.
  • The Myelodysplastic Syndromes Foundation
    mds-foundation.org
    The MDS Foundation is an international organization devoted to the prevention, treatment, and study of myelodysplastic syndromes. Under the "Patient Information" tab you can find informative and useful articles.
  • National Cancer Institute (NCI)
    cancernet.nci.nih.gov/
    The NCI is the U.S. government's cancer clinical planning and outreach organization, under the National Institute of Health (NIH). For expert-reviewed information about MDS, do a search on the term "myelodysplastic syndrome".
  • National Marrow Donor Program (NMDP)
    marrow.org
    The NMDP has the largest listing of volunteer donors in the world, and aims to help connect patients, doctors, donors, and researchers throughout the world. Their website provides comprehensive resources and education.

Finding Clinical Trials*

Your physician can tell you what kind of clinical trial may be appropriate. The following sites offer searchable clinical trial information.

  • Aplastic Anemia & MDS International Foundation, Inc. (AAMDS)
    aamds.org
    Find MDS clinical trials in the "Patient Clinical Trials" tab.
  • The Leukemia and Lymphoma Society (LLS)
    leukemia.org/hm_lls
    Select "Treatment and Clinical Trials" from the navigation to find an easy search tool for clinical trials, plus many more resources.
  • The Myelodysplastic Syndromes Foundation
    mds-foundation.org
    Notices of new studies are often found on the homepage.
  • National Cancer Institute (NCI)
    cancernet.nci.nih.gov/
    By selecting the "Clinical Trials" tab, you can search for supportive care and treatment clinical trials in your area.
  • National Marrow Donor Program (NMDP)
    marrow.org
    To find clinical trials information, do a search on "clinical trials".

Patients' Stories

Reading others' experiences can be uplifting and inspiring.

  • Aplastic Anemia & MDS International Foundation, Inc. (AAMDS)
    aamds.org
    Find MDS stories of inspiration in the "Support and Hope" tab.
  • The Myelodysplastic Syndromes Foundation
    mds-foundation.org
    On the right side of the page, click on "So you have MDS. What now?", an inspiring and informative article written by a physician who has MDS.
  • National Marrow Donor Program (NMDP)
    marrow.org
    Find "Patient Stories" 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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Learn About EXJADE

EXJADE is the once-daily oral treatment 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.

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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.