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I’m frightened. 70 and recently diagnosed aiha cold. I always presumed I would live a long life. Now, not so sure.

A myAIHAteam Member asked a question 💭
Center Moriches, NY
July 10
 · 
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A myAIHAteam Member

I am 72 and was diagnosed with CLL in 2018 and then after becoming increasingly ill with breathlessness, my blood results showed a dangerously low haemoglobin I was admitted to hospital for one of many blood transfusions followed by a decreasing amount of prednisolone. Later after many investigations I was diagnosed with warm AIHA in 2021 that my medical team agreed was triggered by the CLL.
I was prescribed Acalabrutinib & Co-trimoxazole to control the CLL as it was generally agreed that although the CLL was very low level and ordinarily would not have required any intervention or treatment it was decided to treat the CLL and thankfully I have had no further reoccurrence of the warm AHIA. I will have to take these meds for life or until they stop working then I will have to be reassessed for a different medication. The CLL is very low level & ò.just required monitoring (watch & wait), I didn’t realise what was happening to me and after 3 emergency admissions I became very grateful for a diagnosis & treatment which since 2021 has kept the warm AIHA at bay. I understand that this will not cure my AIHA but at least I feel some measure of control also understanding of the condition and what to look for if the medication fails to keep it suppressed.

July 14
myAIHAteam

What is the life expectancy and prognosis for older adults, particularly around age 70, with cold agglutinin disease (CAD)?

The honest answer is that the prognosis becomes more challenging with age, but there's still reason for hope. Research shows that average survival with AIHA has improved significantly over the Show Full Answer

What is the life expectancy and prognosis for older adults, particularly around age 70, with cold agglutinin disease (CAD)?

The honest answer is that the prognosis becomes more challenging with age, but there's still reason for hope. Research shows that average survival with AIHA has improved significantly over the decades, rising from around 8 years to over 12 years.

For those diagnosed after age 30, survival rates are approximately:

- 83% surviving at least 1 year
- 65% surviving at least 5 years For older adults specifically, the prognosis can be more complicated for a couple of key reasons:

- Comorbidities — Older adults are more likely to have other health conditions that can make managing AIHA more complex
- Higher incidence — AIHA occurs about 10 times more often in people over 75 compared to those under 50, suggesting the condition tends to be more active in older age groups The good news is that prognosis has steadily improved over time, and early diagnosis and sticking with treatment make a real difference. Staying warm is especially critical for CAD, as red blood cell destruction is triggered by cold temperatures — even mild cold exposure.

A conversation with a hematologist about personalized treatment options is the best next step for understanding what the outlook looks like for a specific situation.

July 10
A myAIHAteam Member

I'm so sorry that the years are not as full as they once were. Still hoping the best for my elders and their care when living with AIHA. You are amazing!

August 1 (edited)

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Life expectancy 70 yr old female with AIHA cold. History of PE

A myAIHAteam Member asked a question 💭
Center Moriches, NY
May 15

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