Castleman disease remains a complex and poorly understood condition, and while we’ve learned more over the years, many questions remain.
🦠 Some research suggests that viral infections, such as human herpesvirus 8 (HHV-8), may play a role in the development of certain forms of the disease, particularly multicentric Castleman disease.
🧬 Genetic predispositions and immune system dysfunction are also being investigated. But in many cases, the exact cause is still unclear and may differ from person to person, making diagnosis and treatment challenging.
💬 Let’s open the discussion:
Have you been tested for viral infections like HHV-8?
Do you have a family history of autoimmune conditions or rare cancers?
Were there any life events or changes you think may have triggered your first symptoms?
Hi, I'm just seeing this article now and I'd like to share my husband's experience. He was diagnosed with Multicentric Idiopathic Castleman's Disease and POEMS. He was also HHV-8 positive. Doctors originally thought that the Castleman's had caused the POEMS, but turns out that it was the opposite. He had a 5 year remission thanks to an autologous bone marrow transplant in 2012. His therapies included Siltuximab (was out of protocol in Italy at the time so his doctors used it to treat the "amyloidosis" that he also showed) and Rituximab, cortisone and topical testosterone. I'm sure I am forgetting a dozen things though. He relapsed in 2017 and died on April 27th, 2021. Shortly before he passed away, both of his nieces (daughters of his brother) were diagnosed with MS and his brother has psoriasis. I have one child, so I am keenly interested in following all developments in diagnosis and causes.
We have no idea what the triggering event was, but in retrospect, he was sick long before his diagnosis. First symptoms were hormone imbalances. He trained for and ran the NY Marathon in 2008 (close to a 4 hour time!), and the heavy symptoms started shortly after that.
Castleman disease: What do we know about causes and risk factors?https://www.carenity.co.uk/forum/castleman-disease/living-with-castleman-disease/castleman-disease-what-do-we-know-about-causes-and-risk-factors-57852025-08-27 19:53:46
Somya.P
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Somya.P
Community manager
Last activity on 27/08/2025 at 18:38
Joined in 2023
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Hi everyone,
Castleman disease remains a complex and poorly understood condition, and while we’ve learned more over the years, many questions remain.
🦠 Some research suggests that viral infections, such as human herpesvirus 8 (HHV-8), may play a role in the development of certain forms of the disease, particularly multicentric Castleman disease.
🧬 Genetic predispositions and immune system dysfunction are also being investigated. But in many cases, the exact cause is still unclear and may differ from person to person, making diagnosis and treatment challenging.
💬 Let’s open the discussion:
@laracroft44 @LukeIan @Mrepasky @Sarahjane79 @Wellemma @Sashvin @Caski33 @Jurdie @Micki1559 @Faithforever7 @Lilly @georgiana.em_gil @Paddy123 @mjkr1227 @Alice03 @Jwalbornperales @kimberlypolner @Rzrbacknok @jjmurry @Mustang @JessicaAli @Bryan123 @Hender65 @Ikeaaron @Jenr87 @Justinw @emcd1951 @CarolineR @MayaBee @Dhagggart @Vaishali @ALIRAY @Qamar786 @DeeBee123 @george33 @Clair1066 @samora @NAGARAJAN @Lorraineanne @FrankNagel @Castlemanmom @Gwenmestel @lwchau @PENNYLOAFER22 @JillAK @Paola00 @Tormod @ImeldaLong @krystalrosen @Bumble88 @Beastie @EvaLally @Carfee87 @Ikeaaron1 @Leah1405 @MayaThethy @Ikeaaron77 @Olesia17 @MihaiR. @Gracefraser @Paul79 @Tamragb
Your experiences and insights matter, and might help others feel less alone.
Take care,
Somya from the Carenity team 🌼