Acalabrutinib to treat CLL & AIHA

[Wen_dy]

I have been on W&W since 2018 but in this last year have had four admissions to hospital with Auto Immune Haemolytic Anaemia, all admissions required blood transfusions and I felt pretty poorly with breathlessness, fatigue and very low Hb. My CLL is still relatively low level and ordinarily would not require treatment but after many tests and much discussion with my specialist it was agreed that the CLL was probably the trigger for the AIHA so I will be starting on Acalabrutinib in January. I was wondering if anyone else has had experience of CLL & AIHA.

[johnliston]

I had AIHA last winter after 21 years of CLL. My CLL was very low because I'm in remission after treatment 4.5 years earlier. I was treated with Rituxan and Prednisone. AIHA is under control now, but I'm still getting Rituxan every 2 months as maintenance. I expect if it comes back they will want to put me on a BTK inhibitor. I know others who been put on BTKs for AIHA and it worked very well.

john

[HopeME]

Hello:

I’ve had AIHA twice and both time I needed to start a CLL treatment as my bone marrow was heavily infiltrated with CLL. Both times I needed blood transfusions. I’m sure the Acalabrutinib will do the trick for you and solve the problem for quite a while.

Best,

Mark

[Candy62ZS in reply to HopeME]

Hi HopeME Can I ask how heavily infiltrated your bone marrow is please? Mine is almost 80%

Thank you Zxx

[HopeME in reply to Candy62ZS]

Yes. I was about 96% infiltrated each time before my bone marrow stopped functioning. The last time was a year ago today. I went into the hospital for my Venetoclax ramp up and stayed there for six days. This New Year should be better! Start your Acalabrutinib as soon as you are able 😀.

Best,

Mark

[annmcgowan]

Hi AIHA was the trigger for treatment for me. I went onto the flair trial and have had almost 6 years of ibrutinib which has worked really well for me. Acalabrutinib is another BTK inhibitor. I wish you well with your treatment.

Ann

[Nucleusman in reply to annmcgowan]

Had AIHA then put on acalabrutinib November 2022. Now in remission but must keep on taking the drug. Only side effects body bruising and occasional nose bleed. It works

[annmcgowan in reply to Nucleusman]

Yes it does work.

Ann

[SofiaDeo]

I potentially got drug induced AIHA, from (most likely) ibuprofen, possibly buproprion, or the combo of both.. For literal decades the ibuprofen has been my "go to" and I've never taken bupropion before, so I wonder exactly what caused it. I'll re-challenge with buproprion in the spring, possibly adding ibu, to see if the AIHA returns.

To confound all this, my CLL is slowly creeping up instead of holding steady in a partial remission. I'm still technically uMRD4, but my MRD6 number has increased. So who knows to what extent my CLL becoming active, is contributing to, if not causing, the AIHA.

Have you had a bone marrow biopsy ro check degree of infiltration? It's not necessary, just wondering. The repeated bouts of AIHA definately could be CLL, and treating the CLL would likely resolve it if the CLL is causing it. I am sure by now other likely causes have been ruled out, like drugs known to cause AIHA or a viral infection like herpes that has (rarely) caused AIHA in kids (who do not yet have robust immune systems).

Since a single oral agent is the easiest to implement & monitor, it sounds like a good starting point. Especially if most everything else is normal but for the AIHA.

[LeoPa in reply to SofiaDeo]

Ibuprofen has a very bad rep where I live. I'd rather take another pain killer if I had to. Panadol is way better so they say. Why do you prefer Ibuprofen?

[SofiaDeo in reply to LeoPa]

I loved to drink wine, and acetaminophen is not wise to mix with alcohol because of effect on liver. I was a weekly social drinker, did wine tastings, in a wine club, etc. Potential GI upset from NSAID/alcohol mix was the lesser of 2 evils for me.

[Carl_G]

I was on watch and wait but my hemoglobin went down to 7.0 last April. I had AIHA. I got a transfusion and felt better. My doctor started me on zanubrutinib, another BTK inhibitor, and my values have been going up ever since. I was 12.8 yesterday.

[tesoro5858]

I developed AIHA in March 2021 in my 7th year of W&W. Initially tried prednisone but was refractory in my case, which is common in 50% of CLLers. I then received 6 cycles of obinutuzumab which arrested my hemolysis and also knocked my CLL into partial remission. MRD-4 via blood flow cytometry showed a low number of CLL cells after treatment ended. I am concerned that the AIHA will return once my CLL cells become more numerous. I don't know if it's the CLL cells that go rogue and start destroying RBCs or normal B cell lymphocytes. My specialist did say that treating the underlying CLL may be a future consideration if the AIHA becomes a persistent issue, which it has not been yet in my case. Best wishes to you. Susan

[hervec]

Bonjour

I developed AIHA in automne 2017 five years after FCR. At this time the CLL was in relapse. It was treated with prednison. I started ibrutinb in march 2018.

regards Herve C

[Deach]

No AIHA for me, but been on Acalabrutinib since 2021 and my blood numbers have been normal ever since.