CLL with AIHA: progressive anemia

[mrivinus]

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.

[AussieNeil Administrator]

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

[annmcgowan]

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

[mrivinus in reply to annmcgowan]

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

[Quarry]

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

[mrivinus in reply to Quarry]

Hi Quarry,

Thank you; very helpful. MARK

[cbardill]

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!

[Wildcatter]

Hello. I’m new to the site and I just posted a topic regarding being diagnosed with AIHA prior to CLL (you might want to look at that). I think the first line of defense for AIHA is Prednisone. It does have some side effects such as weight gain but for me, that’s not as bad as some of the other side effects I had with other meds. If at some point you do need to treat your AIHA hopefully Prednisone will knock it back quick and you can taper off quickly as possible. Good luck with it and I wish you well.

Wildcatter

[deveritt]

I'm on that journey too. My AHIA (affects around 7% of CLL patients) was initially kept in check by a high dose of Prednisolone (70mg then ramping down) but after slowly reducing the dose to around 10mg it returned. I started again at 60mg and am now at 7.5 after a much longer reduction period, with the AIHA still in remission. My consultant just informed me that it's common to see a relapse at 5mg, so I'm cautious. This month, he's advised 5mg/7.5mg on alternate days.

The unexpected bonus is that it seems to have improved my CLL, with a lower white cell and Lymphocyte count.

I recently stopped quite demanding teaching work, and also feel better for it, although the only difference is that I now don't really have to push myself, and I have more time.

When this is over, I aim to write up my experience here for others.

[mrivinus]

Hi deveritt, My Hgb dropped to 8.8G/Dl in June of 2018(two years after my AIHA dx). High dose prednisone rapidly increased the hgb to 12.2G/Dl. I tapered down to 5mg over four months. I was maintained on 5mg for a year as my haptoglobin and reticulocyte count indicated ongoing hemolysis despite the hgb being in the near-normal range. In April 2020 prednisone was d/c'd. My Hgb has been stable since, hoping it will stay there for a long time. As others have commented above my white count dropped when I started prednisone, has not returned to pre-prednisone levels. Thus I continue on W&W, am feeling well