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Overlapping symptoms can make diagnosis difficult

  • About iMCD
  • iMCD Symptoms
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iMCD Symptoms

The symptoms that will help you better understand iMCD

The symptoms of idiopathic multicentric Castleman disease (iMCD) can overlap with other conditions, which is why this disease can be difficult to diagnose. 

It’s important for patients to track their symptoms and report them to their doctor. Multiple swollen lymph nodes are a hallmark of iMCD. In some patients, the swollen lymph nodes may not be visible and may require imaging tests to confirm their presence. If swollen lymph nodes are accompanied by any of the following symptoms, you should contact your doctor. 

Swollen Lymph Nodes

Enlarged or swollen lymph nodes may be found throughout the body.

Fatigue

Having low energy or feeling overtired.

Anemia

A condition in which a person has low red blood cell count and might feel tired.

Enlarged Organs

The liver or spleen may be larger than normal.

Night Sweats

Repeated episodes of excessive sweating during sleep.

Fever

A key sign that the immune system has been activated.

Unintended Weight Change

Significant change in weight can be a sign of an underlying medical condition.

Flu-like Symptoms

Fever, night sweats, cough, fatigue, and weight loss.

Rash

An area of the skin that may become red, scaly, and itchy.

Fluid Accumulation

Swelling caused by excess fluid in body tissues.

Diagnosing iMCD can be challenging, so it’s important to know the symptoms to prevent a delay in diagnosis.

Use this Symptom Checker to see if your symptoms are consistent with iMCD.

Check your SYMPTOMS
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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. 

Symptom Checker

Select all of the symptoms you are currently experiencing.

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.

100%
Number of swollen lymph nodes and where they are located in your body
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Date of last examination
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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.

86%
Severity of fatigue
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Frequency of fatigue
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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.

73%
Date of last blood test
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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.

59%
Enlarged organ(s) detected
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Date you found out about the enlarged organ(s)
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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.

54%
Frequency of night sweats
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Date when night sweats began
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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.

89%
Flu-like symptoms experienced
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Frequency of symptoms
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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.

42%
Number of pounds lost
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Date when weight loss began
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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.

9%
Rash symptoms experienced
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Frequency of rash
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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.

58%
Body parts affected by fluid accumulation
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Date when fluid accumulation began
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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.

52%
Frequency of unexplained fever episodes
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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.

If you know someone who has been struggling with the above-mentioned symptoms and hasn’t received a diagnosis yet, please share the Symptom Checker with them.

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The road to diagnosis can be full of twists and turns

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One symptom that made me really rethink everything was [night sweats]. Waking up when it was cold outside, I would be just completely drenched with sweat.

Jessica, living with iMCD since 2017 Watch Jessica’s story
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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.

Download as PDF

Healthcare professionals can find information about the latest diagnostic criteria and treatment options by visiting

KnowiMCD.com/HCP

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:

Abbreviations: CT, computed tomography; MRI, magnetic resonance imaging; PET, positron emission tomography.

© 2022 EUSA Pharma (US) LLC. All rights reserved.
US-NPS-2200024      1/22

Healthcare professionals can find information about the latest diagnostic criteria and treatment options by visiting

KnowiMCD.com/HCP

Check your SYMPTOMS

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Third-party trademarks used herein are trademarks of their respective owners. This site is not intended to provide medical advice. Please see your physician. The Symptom Checker is not intended for use in the diagnosis of iMCD.

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  • July 2022
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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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