Castleman disease is not a single illness but a group of rare disorders that involve the overgrowth of cells in the body's lymph nodes. The four recognized subtypes, Unicentric Castleman Disease (UCD), HHV-8-associated Multicentric Castleman Disease (MCD), Idiopathic Multicentric Castleman Disease (iMCD), and POEMS-associated MCD, each have unique features and challenges. UCD affects a single lymph node and is often treated surgically, while MCD (especially iMCD and HHV-8 MCD) can be more systemic and require ongoing therapies.
Knowing which type you have can greatly shape your treatment plan and what symptoms you experience. Some, like fatigue, fever, anemia, or swollen lymph nodes, might be common across types, while others, like those linked to POEMS, can be quite specific.
👉 Which type of Castleman disease were you diagnosed with?
👉 What helped your medical team figure it out: scans, biopsies, blood work?
👉 Have your symptoms or treatment journey felt typical for your subtype?
@mrepasky@castlemanvan@toya686@Dada2115@remarc
Let’s open up this space to compare experiences and help each other feel less alone on this rare and often confusing path.
Somya.P
Community managerGood advisor
Somya.P
Community manager
Last activity on 06/13/2025 at 6:10 PM
Joined in 2023
647 comments posted | 3 in the Castleman disease Forum
22 of their responses were helpful to members
Rewards
Good Advisor
Contributor
Messenger
Explorer
Friend
Hello everyone,
How are you feeling today?
Castleman disease is not a single illness but a group of rare disorders that involve the overgrowth of cells in the body's lymph nodes. The four recognized subtypes, Unicentric Castleman Disease (UCD), HHV-8-associated Multicentric Castleman Disease (MCD), Idiopathic Multicentric Castleman Disease (iMCD), and POEMS-associated MCD, each have unique features and challenges. UCD affects a single lymph node and is often treated surgically, while MCD (especially iMCD and HHV-8 MCD) can be more systemic and require ongoing therapies.
Knowing which type you have can greatly shape your treatment plan and what symptoms you experience. Some, like fatigue, fever, anemia, or swollen lymph nodes, might be common across types, while others, like those linked to POEMS, can be quite specific.
👉 Which type of Castleman disease were you diagnosed with?
👉 What helped your medical team figure it out: scans, biopsies, blood work?
👉 Have your symptoms or treatment journey felt typical for your subtype?
@mrepasky @castlemanvan @toya686 @Dada2115 @remarc
Let’s open up this space to compare experiences and help each other feel less alone on this rare and often confusing path.
Take care,
Somya from the Carenity team 🌼