Knowing what it takes to diagnose iMCD
Diagnostic Tests
Patience and persistence can play a key role in getting an accurate diagnosis
In patients with idiopathic multicentric Castleman disease (iMCD), a delayed diagnosis is common. That’s why it’s important to track your symptoms and report them to your doctor.
If you are someone who potentially has iMCD, your journey may start at a primary care
physician’s office. You might meet doctors who specialize in different types of conditions, and
they may conduct a few tests to help you get a proper diagnosis.
Doctors
- A primary care physician will conduct blood tests/imaging and refer you to a specialist
- An infectious disease expert will rule out infections
- A rheumatologist will rule out autoimmune conditions
- A nephrologist will check to ensure that kidneys are functioning properly
- A hematologist-oncologist will rule out cancerous conditions
- A surgeon will remove a swollen lymph node
- A pathologist will examine a swollen lymph node
This list is not a complete representation of all the doctors a patient
might meet during their journey to diagnosis.
Tests
- Physical examination of swollen lymph nodes, enlarged organs, and fluid accumulation
- Blood tests to look for signs of infection, autoimmune conditions, and kidney damage
- An x-ray, a PET scan, or a CT scan will reveal the presence of multiple swollen lymph nodes and enlarged organs
Biopsies
- Fine needle aspiration (FNA) or core biopsy may be used to examine a swollen lymph node, but the results may be inconclusive
- An excisional biopsy of a swollen lymph node is the only definitive way to diagnose iMCD
Getting an accurate diagnosis for a rare disease like iMCD is never easy. It’s important to work
with doctors and remain persistent throughout the diagnostic journey.
Find out what iMCD can look like
Guidelines that can help diagnose iMCD
For years, little has been known about iMCD, which has made the diagnostic journey frustrating for patients.
Shortening the time from symptom onset to diagnosis can help improve long-term outcomes. There
are also guidelines in place to
assist doctors in diagnosing this mysterious condition.
Major Criteria
- A swollen lymph node should be removed and examined under a microscope to see if it has features consistent with Castleman disease
- Imaging tests like CT scans or PET scans will help confirm the presence of multiple swollen lymph nodes throughout the body
Minor Criteria
- Patients should meet at least 2 of 11 minor criteria, such as the presence of enlarged liver, enlarged spleen, or other symptoms like fever, fatigue, or fluid accumulation
- 1 or more criteria must be a laboratory abnormality, such as anemia or increased protein in the urine
Exclusion Criteria
- Castleman-like changes and clinical abnormalities may be present in several cancerous, infectious, and autoimmune conditions and should be excluded by the process of elimination
- HHV-8 must also be excluded
Sign up for more on iMCD
"*" indicates required fields
By checking the adjacent box, you agree to allow EUSA Pharma to collect the information provided and to be contacted by EUSA Pharma in the future regarding its IL-6 neutralizing products and related disease education.
By submitting this form, you agree to allow EUSA Pharma to collect the information provided and to be contacted directly by a EUSA Pharma sales representative. Your information will not be used for any other purpose than for a representative to respond to your information request, or for us to send you other EUSA Pharma updates if you have registered to receive them.
EUSA Pharma will not sell, rent, or otherwise distribute your name and any personally identifiable information outside of EUSA Pharma. EUSA Pharma will only use your information in accordance with its Privacy Policy.
Your iMCD Diary
Save and use this Patient Diary online with your Google account by selecting “Google Sheet” and then “Use Template,” or download to your computer by selecting “Excel File.”
No data is stored by or transferred to this KnowiMCD.com website. This site contains links to other websites, and these links will direct users to third-party sites.
Loading...
Please wait a moment.
Are you located in the United States?
If so, you will be directed to the website that contains information intended for a US audience.
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.
You are now leaving KnowiMCD.com.
Please click “OK” to continue or “CANCEL” to return to KnowiMCD.com