Understanding iMCD:
What it is and what it isn’t
Idiopathic multicentric Castleman disease (iMCD) is a rare and progressive lymphoproliferative disease. It affects multiple groups of lymph nodes, and the symptoms can mimic cancerous, autoimmune, and infectious disorders. This can make it extremely difficult for doctors to accurately diagnose iMCD.
Commonly observed symptoms that may make it difficult to diagnose iMCD
Tracking and reporting your symptoms can help shorten the time to diagnosis.
Multiple Swollen
Lymph Nodes
Multiple Swollen
Lymph Nodes
Enlarged or swollen lymph nodes may be found throughout the body. Many patients experience this in their neck, armpit, stomach, or groin areas.
Enlarged Organs
Enlarged Organs
Abnormal swelling or abdominal tenderness may be a sign of enlarged organs. The liver or spleen may be larger than normal.
Night Sweats
Night Sweats
Repeated episodes of excessive sweating during sleep that can be caused by underlying conditions.
Flu-like Symptoms
Flu-like Symptoms
Fever, night sweats, cough, fatigue, and unintentional weight loss, in combination with other symptoms.
Fluid Accumulation
Fluid Accumulation
Swelling—excess fluid trapped in body tissues—may look like weight gain. Many patients experience this in their face, stomach, feet, and/or ankles.
Are your symptoms a sign of iMCD?
Accurately reporting your symptoms to a doctor can help you get one step closer to receiving a correct diagnosis.
Use the Symptom Checker to find out if your symptoms are consistent with iMCD. It’s important to remember that only a doctor can confirm an iMCD diagnosis.
Swollen Lymph Nodes
List the number of swollen lymph nodes and where they are located in your body
Date of last examination
Swollen Lymph Nodes
100% of patients with iMCD have swollen lymph nodes.
If doctors find multiple enlarged lymph nodes during the examination, they might perform an excisional biopsy, which is the only definitive way to diagnose iMCD.
During an excisional biopsy, a doctor will surgically remove the affected lymph node. A pathologist will examine the excised lymph node under the microscope to look for features consistent with Castleman disease.
Talk to your doctor if you have any questions about this procedure.
Fatigue
How severe is your fatigue?
How many days per month do you experience fatigue?
Fatigue
86% of patients with iMCD have fatigue.
If your energy is lower than normal, it can be a sign of an underlying condition. Unrelenting exhaustion should be reported to a doctor, who can find out the cause behind it.
Anemia
When was the last time you had a blood test?
Anemia
73% of patients with iMCD have anemia.
Anemia is the lack of enough healthy red blood cells, which carry oxygen to different parts of the body. Having anemia can make you feel tired and can be a warning sign of a serious illness. Please contact your doctor if you feel like you have a lack of energy.
Enlarged Organs
List the name(s) of the organ(s)
When did you find out about the enlarged organ(s)?
Enlarged Organs
59% of patients with iMCD have enlarged organs.
During a physical examination, a doctor may be able to identify any enlarged organs in your body like the liver or the spleen. Enlarged organs can also be a sign of an underlying illness and may need further examination to identify the cause.
Night Sweats
How many days per month do you have night sweats?
When did your night sweats start?
Night Sweats
54% of patients with iMCD have night sweats.
Night sweats are repeated episodes of excessive sweating during sleep and are not a common occurrence. Please contact your doctor if you are experiencing night sweats, as this symptom could be related to an underlying condition.
Flu-like Symptoms
Which symptoms do you experience?
How many days per month do you experience these symptoms?
Flu-like Symptoms
89% of patients with iMCD have flu-like symptoms.
Cough, body aches, and tiredness, along with fever and night sweats, can be signs of the flu. If these symptoms persist, you should contact your doctor.
Unintended Weight Change
How many pounds have you lost?
When did you first notice any change in weight?
Unintended Weight Change
42% of patients with iMCD have unintended weight loss.
If you aren’t consciously making an effort to lose weight, it might be related to an infection or an underlying condition. If there is a change in weight of more than 5% of your body weight in a period of 6 to 12 months, you should contact your doctor to find the cause of your unintended weight change.
Rash
Select the symptom(s) that accurately describe your rash:
When did you first notice a rash?
Rash
9% of patients with iMCD have rashes.
Rash can be described as an area of the skin that changes in texture and may feel painful or appear red, scaly, bumpy, dry, itchy, or swollen. It may be a sign of an underlying medical condition.
Fluid Accumulation
On which part(s) of the body did you notice fluid accumulation?
When did you first notice fluid accumulation?
Fluid Accumulation
58% of patients with iMCD have fluid accumulation.
Fluid accumulation, also known as edema, is swelling or puffiness of the tissue directly under your skin or increased abdominal size. It may be a sign of an underlying disease, which may need to be treated.
Fever
Unexplained fever episodes per year
Fever
52% of patients with iMCD have episodes of fever.
Fever is one of the first signs of an illness, signaling that something out of the ordinary is going on in the body. Repeated episodes of fever—observed in many patients with iMCD—are a cause for concern. Consult your doctor if you are experiencing this symptom.
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Your report
A diagnosis of idiopathic multicentric Castleman disease (iMCD) requires the presence of multiple swollen or enlarged lymph nodes. In some patients, the swollen lymph nodes may not be visible and may require imaging tests to confirm their presence. These symptoms alone are not enough to diagnose iMCD, as they could be signs of other diseases.
Talk to your doctor if you have any questions about this report.
Additional information about iMCD is available for healthcare professionals at KnowiMCD.com/HCP.
To protect your privacy, KnowiMCD.com does not save any of your information. Please be sure to download, save, and/or print this report.
Healthcare professionals can find information about the latest diagnostic criteria and treatment options by visiting
Your report
A diagnosis of idiopathic multicentric Castleman disease (iMCD) requires the presence of multiple swollen or enlarged lymph nodes. In some patients, the swollen lymph nodes may not be visible and may require imaging tests to confirm their presence. These symptoms alone are not enough to diagnose iMCD, as they could be signs of other diseases.
Talk to your doctor if you have any questions about this report.
Additional information about iMCD is available for healthcare professionals at KnowiMCD.com/HCP.
To protect your privacy, KnowiMCD.com does not save any of your information. Please be sure to download, save, and/or print this report.
Possible tests
In order to confirm a diagnosis of iMCD, a doctor will need to perform tests to detect the presence of multiple swollen lymph nodes.
- Physical examination
- Lab tests—blood or urine test
- Imaging tests—CT scan, x-ray, MRI, PET scan
- Excisional biopsy
By performing some of the above-mentioned tests, a doctor will be able to eliminate the possibility of autoimmune, cancerous, and infectious diseases. An excisional biopsy of the enlarged lymph node can confirm the diagnosis of iMCD.
The road to diagnosis
iMCD is a rare disease that can be difficult to diagnose because it can mimic so many other diseases. It may take a while to receive an accurate diagnosis because your doctor must rule out several different conditions before suspecting iMCD.
You may start your diagnosis journey at your primary care physician’s office, where you may be referred to a specialist.
Preparing for your appointment
Here are some tips to help you have a conversation with your doctor:
- Write down any symptoms you’ve experienced, even if they may seem unrelated
- Share the results of this Symptom Checker with your doctor
By performing some of the above-mentioned tests, a doctor will be able to eliminate the possibility of autoimmune, cancerous, and infectious diseases. An excisional biopsy of the enlarged lymph node can confirm the diagnosis of iMCD.
Start the conversation
Here are some tips to help you talk to your doctor about iMCD:
- What kinds of tests might I need to confirm iMCD?
- Do I need to plan for follow-up visits?
- What treatments are available for iMCD? How will they affect my life?
- Do you have any educational materials that I can take with me?
- What else do I need to know about iMCD?
Notes:
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US-NPS-2200024 1/22
Healthcare professionals can find information about the latest diagnostic criteria and treatment options by visiting
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Viral hemophagocytic lymphohistiocytosis.
A doctor who specializes in the branch of medicine that deals with rheumatic conditions.
Polyneuropathy, organomegaly, endocrinopathy, monoclonal gammopathy, and skin changes.
Positron emission tomography (PET) is a method of producing a 3-dimensional image of the internal
structures of body tissues after administering a natural biochemical substance like glucose or fatty
acids. These images are generated with the help of a computer.
A doctor who evaluates the changes caused by disease in tissues and body fluids and helps reach a
diagnosis.
A doctor who specializes in the diagnosis and treatment of kidney abnormalities.
Macrophage activation syndrome.
Malignancy-associated hemophagocytic lymphohistiocytosis.
A disease in which cells of the lymph system grow excessively
Lymph nodes make immune cells that help the body fight infection.
A key signaling molecule that helps to regulate the body’s immune system.
Infectious disease medicine is the subspecialty of internal medicine that focuses on diagnosing and
managing infections.
A rare condition that affects multiple groups of lymph nodes throughout the body. Patients with iMCD
are HIV negative and HHV-8 negative.
The underlying cause or origin of a disease is unknown.
Hemophagocytic lymphohistiocytosis.
Human immunodeficiency virus.
Human herpesvirus-8.
A doctor who specializes in the branch of medical science that deals with cancers of the blood and
blood-forming tissues.
Powerful molecules that are normally secreted by the cells of the immune system in response to
infectious or noninfectious agents.
An overreaction of the body’s immune system in which too many cytokines are released into the
bloodstream very quickly, with potentially severe or life-threatening effects.
Computed tomography (CT) is a method of producing an image of the internal structures by passing an
x‑ray through the body.
The removal and examination of tissue, cells, or fluids from the body.
A condition in which the body’s immune system accidentally attacks itself.
Autoimmune lymphoproliferative syndrome.
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