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CLL Support Association
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CLL with AIHA: progressive anemia

First post: I was diagnosed in May 2016 with CLL and AIHA (auto-immune hemolytic anemia) in May 2016. I have been W&W since that time. My WBCs(33.5K/UL) and absolute leukocytes(21.8K/UL) have been climbing, but not close to a six month doubling and I am asymptomatic. My Hgb has recently dropped from a pre-diagnosis 13.4G/DL to 10.2G/DL. My LDH(LD) is high 491U/L, my hapyoglobin is very low <8Mg/L showing an active hemolytic process. As I am not displaying any signs/symptoms my (2) hem/onc MDs do not feel that I need to be treated for my low Hgb(AIHA), but have mentioned that if I do become symptomatic that the first line treatment is high-dose steroids. Is anyone aware of other treatments for symptomatic AIHA? Obviously I am aware that all medications have side-effects, but would like to avoid high-dose prednisone if possible because of its side-effect profile. Thank you.

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One of our members Quarry, has been on this journey, so I'm sure you'll find his posts of interest:

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

Neil

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Hi I am about to be screened for the FlAIR trial for progressive CLL based purely on my Hg being around 10 and platlets the same. I have never had B (cancer) symptoms, night sweats etc. I had a few infections in 2016 all recovered with antibiotics and received immuniglobin infusions that year which lead to no viruses or infections in 2017. Never the less my haematologists first and second opinions advised treatment. While waiting I experienced AIHA and my Hg dropped to about 5. This was successfully treat with steroids. I am about to be screened for the trial and my haematologist is giving me mycophenplate mofetil (MMF) an immunosuppressant meanwhile,which is working well for me. I hope you find this helpful and wish you well.

Regards

Ann

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Very helpful, thank you. I hope that you continue to experience good response to the MMF. MARK

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As Neil says, I have been on the journey with active AIHA and low-level CLL. You do need to keep an eye on HB as it is low and if it starts to move further down quickly, you will need to get treatment - I suspect you will notice if it drops further as you will get breathless when doing relatively minor exercise.

First line of treatment is indeed high doses of steroids and this works in 2 out of 3 people. I am not sure there is a good alternative for first line, as other treatments start to treat CLL too (and if possible, it is best to keep these for when you really need CLL treatment). Yes there are side-effects and it is scary reading the full list. But remember, they have to list all possible side-effects and most are very, very rare. I only suffered relatively minor ones - initially hard to sleep etc.

In my case, whilst my HB climbed on the steroids, as soon as I came off them it dropped again (so I am the 1 in 3 where it does not work): in my case I had a splenectomy as second line (there are other possibilities) because my 'youth' meant I could cope with the operation well.....4 years later so far so good.....

Hope this helps

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Hi Quarry,

Thank you; very helpful. MARK

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My CLL path closely matches yours. 2 years of W&W and then the onset of AIHA. I am in my 4th week of high-dose prednisone, and will be moving directly into treatment for the underlying CLL, either with imbruvica or 1X month infusions ofobinutuzumab plus chlorambucil as I'm tapered off the prednisone.

AIHA seems to be a very rare complication of CLL, and high-dose prednisone seems to be the treatment standard. I have tolerated it pretty well, makes me quite jittery for most of the day as I take it all in one dose in the morning, and it has interfered with my sleep and caused constipation. But I feel a whole lot better then I did at the worst of the anemia. ( At the lowest my hemoglobin was 7.3, I am now back to a little under 10.)

I am very interested in hearing from you and any other CLL folks who have developed AIHA. Trying to educate myself and ask good questions of my oncologist, but it has been a little overwhelming.

I wish you well in your treatment!

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