CLL with AIHA

[Wen_dy]

I have been on W&W for just over 2 years then became unwell a few weeks ago and was admitted to hospital with Auto Immune Haemolytic Anaemia (AIHA).

It is unsure if one triggered the other as my CLL with AIHA have moved to a more active state with both now are undergoing treatment.

Has anyone information on AIHA? Trying to find reputable and reliable information is proving very difficult.

Thank you

[Photo300]

Hi Wend_dy, like you I was originally on W&W and after a few months acquired AIHA, and was admitted to hospital last summer. After a course of steroids everything appeared to be fine and then the AIHA returned at Easter so back to hospital. This time my doctor decided to start treatment for the CLL and he believed this was cause of my AIHA. I started on a course of O&V and everything thing seems to be ok at the moment.

One document I found useful was from the Oxford University Hospital the link is ouh.nhs.uk/patient-guide/le...

[Wen_dy in reply to Photo300]

Thank you

[annmcgowan]

Hi I had AIHA just prior to treatment. It was treated with steroids successfully and I am now 3.5 years on ibrutinib on the Flair trial and doing well.Good luck

Ann

[Wen_dy in reply to annmcgowan]

Thank you

[thb4747]

Hi Wen_dy,I’ve had AIHA 3 times — 2006, 2013 and 2017 — and on each occasion my HGB dropped lower than the time before. 77, 56, 34. At 34, nurses told me my organs should have been shutting down. Apparently AIHA occurs in about 15% of CLL patients. No one seems to know why! I’ve had prednisone treatment each time with the addition of Rituximab and a course of FCR lite on the 3rd occasion.

Here’s a reputable resource that I found useful:

ouh.nhs.uk/patient-guide/le...

Wishing you well,

Cheers,

Rob

[Wen_dy in reply to thb4747]

Thank you Rob

[thb4747]

I now see that someone else recommended this document — so it’s clearly reputable!

[FarmerJacks]

Hi, I had AIHA in January. My Hg went right down to 33. Had some blood transfusions. Took them a few days to diagnose it. Discharged on 93mg Prednisolone and it went away. The steroids have also greatly helped my CLL. The difficulty has been coming off the steroids. Some big side affects at times and can't get rid of the 'moon face'. I'm now down to 12mg, going down 1mg every 2 weeks !! Hopefully it will stay away now. Good luck to you.

[SantaZia]

This is a good up-to-date article. I was recently diagnosed with cAIHA. ncbi.nlm.nih.gov/pmc/articl... start treatment in a week or so with Rituximab and a steroid to prevent reaction. The first line treatment is a little different for cAIHA as unlike wAIHA steroids are not effective. Best of luck with your treatment.