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In 2015 I was diagnosed with ITP. Promacta worked up until 2024. Now nothing works and my platelets 5K. Bone marrow biopsy? Spendectomy?

A myITPteam Member asked a question 💭
October 5
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Be the first to react
A myITPteam Member

@A myITPteam Member That is really good to hear that you are not experiencing bleeding despite such a low count. Hoping Wednesday’s conversation brings some clarity and a clear next step! Keep us posted ☺️

October 8
A myITPteam Member

Clari- TY for touching base. I'm very fortunate that I do not have bleeding or severe bruising even with a 4K plate count. I will have a conversation with the oncologist on Wednesday to schedule a bone marrow biopsy. My hope is to get an idea of the plate size, production, etc.

October 6
A myITPteam Member

@A myITPteam Member That is a really difficult place to be after so many years of Promacta working. When BTK and SYK inhibitors have also failed, it really narrows the path, this sounds like a conversation worth having urgently with your hematologist if you haven’t already. How are you holding up?

October 6
A myITPteam Member

BTK and SYK inhibitors have been tried and failed.

October 5
myITPteam

That's a really tough situation — nearly a decade of Promacta working and then hitting a wall is genuinely exhausting and scary. A platelet count of 5K is seriously low, so it makes sense that both a bone marrow biopsy and splenectomy are on the table right now.

A bone marrow biopsy helps doctors understand what's happening Show Full Answer

That's a really tough situation — nearly a decade of Promacta working and then hitting a wall is genuinely exhausting and scary. A platelet count of 5K is seriously low, so it makes sense that both a bone marrow biopsy and splenectomy are on the table right now.

A bone marrow biopsy helps doctors understand what's happening at the source — it can reveal whether the bone marrow is producing enough platelets or if something else is going on. This information can guide which treatments might actually work for a specific situation. Splenectomy is typically considered when other treatments haven't kept platelet counts at a safe level. Here's what's generally known about it:

- About 60% of people who have a splenectomy don't need medical therapy again after surgery
- However, it carries lifelong risks, including serious infection and blood clots
- Doctors often delay it when possible, but at 5K platelets with nothing working, it may be a more urgent conversation

There are also newer treatment options worth asking about, including:

- BTK inhibitors like rilzabrutinib (Wayrilz), approved for persistent or chronic ITP that hasn't responded to earlier treatments
- SYK inhibitors like fostamatinib (Tavalisse)
- Anti-CD20 therapies like rituximab

Given how complex this situation is, pushing for a referral to a hematologist who specializes in ITP — if not already involved — could open doors to options that a general hematologist might not immediately consider.

October 5

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