CLL Support Association
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Autoimmune haemolytic anaemia - AIHA

Hello, i am a new member and have found the discussions very helpful. I need some help please.

I was diagnosed with CLL a year ago. I was put on steroid therapy as found to have haemolysis.

In July I began FCR - the plan was for a cycle of six treatments.

Following my second treatment, my haemoglobin level fell, necessitating a blood transfusion.

I had my third treatment a week later than originally scheduled.

Following this treatment ( 4th October ), my haemoglobin level fell again and I needed a second blood transfusion ( 28th October).

My 4th treatment due on 4th November has been postponed.

I have AIHA.

I am having further blood tests and a CT scan next week and then a review and decision - what next.

I wonder if anyone else has experienced the above.

I would welcome any advise, ect.

5 Replies
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Hi School3,

I'm glad you've found the discussions on this site very helpful. Sharing your experiences will also help others going through your current uncertainties know that they aren't in uncharted waters.

Have you found these related posts?

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

It's not unusual to have treatments delayed until blood counts recover. Sometimes you also need a bit of help via transfusions or blood cell stimulating drugs to get your counts back into an acceptable range for treatment.

Neil

Reply

I might be similar....but might not! AIHA is not simple ..... and only around 10% of CLLers get it and its link with CLL is very varied.....so by the time you get to end of each path, there are very very few cases....

In my case, I was diagnosed with CLL a year ago. My CLL is stable and I think fairly 'dormant'. But it has kicked off the AIHA. Steroids were effective in stopping haemolosys/reducing spleen whilst on them, but as soon as I came off them my HB went off cliff So I am back on steroids as emergency to control and next step is to have my spleen out (I hear more about when in 10 days). I think now that I have the 'warm' AIHA type (a question for my hamotologist), but I am thinking of it as almost separate from the CLL (even though CLL kicked it off).

I also don't know in your case if the steroids worked (66% chance they do) in stopping the haemolosys, at least for now (my understanding is in cases where it does work, remission can last some years, but is unlikely to be permanent). From your post, I am assuming it did work and now FCR is to treat the CLL.

The recent UK treatment guidelines of CLL diagnosis/treatment [Neil has linked to it - see below :) ] have a section on AIHA, which suggest in most cases the AIHA should be treated/dealt with before CLL (if both need treatment at same time). So is your AIHA in remission before the CLL treatment?

As to CLL treatment.......I have not got there yet, so know nothing!

1 like
Reply

Pages 13 to 15 cover AIHA and other autoimmune complications in CLL.

onlinelibrary.wiley.com/doi...

Plus another post by Quarry on AIHA

healthunlocked.com/cllsuppo...

How to copy and paste links in your posts/questions

healthunlocked.com/cllsuppo...

Neil

Reply

Hi,

Also just diagnosed with AIHA. My CLL was getting close to needing treatment anyway with gradually declining HGB and lymph nodes / spleen but then my HGB crashed to 6. Get tired pretty easily.

Been on 100 mg prednisone for 2 days awaiting transfusion tomorrow - took them 3 days to find a good match because of some antibody in my blood called panaglutination(?). Starting Ibrutinib soon, which will hopefully stabilize everything. Diagnosed a year ago stage 0. Got second opinion from MD Anderson which was a great idea - they found IGHV unmutated which steers treatment to Ibrutinib vs chemo.

Thanks for sharing your stories.

Tom

Reply

Hi Tom,

Good luck with your AIHA and CLL treatment.

I too have both CLL and AIHA. my CLL seems to be stable at the moment. My Doc is trying to get AIHA under control. He put me on Prednisone @ 60mg/day November last year. It brought my Hematrocrit from 20 to 30 but stopped there. After ramping me back down my Hematrocrit dropped again. I am presently having infusions of Rituxan and will have my 4th and last one this Friday. Looking forward for Rituxan solving this.

Dave

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