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MCD can be caused by a virus
called human herpesvirus 8

This type of MCD, known as HHV8-positive MCD, is usually found in people with weakened or poor immune systems.

However, in many patients, the cause of MCD is not known. This type of MCD is called idiopathic MCD, or iMCD. A subtype of iMCD known as TAFRO involves specific symptoms including abnormally low levels of platelets in the blood (thrombocytopaenia).1

iMCD is a very serious disease
and can be fatal

Some patients may experience only mild symptoms at diagnosis, but others can experience more severe symptoms.2 iMCD can increase the risk of organ failure and malignancies.3 Data indicate that 65% of patients with iMCD are alive 5 years after diagnosis.1

iMCD requires life-long treatment

iMCD is a chronic and progressive disease. Life-long treatment is required to reduce the risk of relapse.1

What are the

signs and symptoms

of MCD?

If you have iMCD you may have several of the following symptoms:

icon-fever-white

Fever
(high temperature)

icon-sweats-white

Sweating
at night

icon-feeling-tired-white

Feeling tired or weak (loss of strength)

icon-feeling-sick-white

Feeling or
being sick

icon-difficult-to-breath-white

Finding it difficult
to breathe

icon-weight-loss-white

Unexpected
weight loss

icon-tingling

Tingling or lack of
feeling (numbness) in
your hands and feet

icon-skinrash

Skin rash

icon-swelling

Swelling
(for example around
your foot, ankle, or leg)

Talk to your doctor if you have any of these symptoms, especially if you have experienced them for several days. If you have difficulty breathing, see a doctor as soon as possible.

MCD symptoms can be mistaken for something else

Early on in the diagnosis process, you and your doctor may think these symptoms are due to other diseases or illnesses, delaying the correct diagnosis.

Medical   tests  and  examinations

may identify other signs of MCD, including:

icon-kidneys

Your kidneys not
working properly

icon-spleen

Your spleen and/or liver
are larger than normal

icon-lymphnodes

Lymph nodes that are larger than normal

icon-bloodtest

You have a low number
of red blood cells
(which are responsible for
carrying oxygen around
your body)

LIVING WITH iMCD USEFUL RESOURCES
REFERENCES

References

  1. Fajgenbaum DC et al. International, evidence-based consensus diagnostic criteria for -HHV8-negative/idiopathic multicentric Castleman disease. Blood 2017; 129(12): 1646–1657.
  2. Lomas OC et al. The management of Castleman disease. British Journal of Haematology 2021; 195(3): 328–337.
  3. Mukherjee S et al. Organ dysfunction, thrombotic events and malignancies in patients with idiopathic multicentric Castleman disease: a population-level US health claims analysis. Leukemia 2022; 36: 2539–2543.

Sources:
American Cancer Society: https://www.cancer.org/cancer/castleman-disease (Date Accessed 6 Nov 2023)
Genetic and Rare Diseases Information Centre, Multicentric Castleman disease: https://rarediseases.info.nih.gov/diseases/9644/multicentric-castleman-disease (Date Accessed 6 Nov 2023)
National Organization for Rare Disorders: https://rarediseases.org/rare-diseases/castlemans-disease/ (Date Accessed 6 Nov 2023)

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