AHA--autoimmune hemolytic anemia

[kulachick]

My husband is on Venclexta and has developed autoimmune hemolytic anemia for the second time (first time was when he was on Ibrutinib). First treatment was prednisone and he had a tough time getting off of it--even very gradually. Now he has had his second round of Rituxin and so far the HGB has not risen above 8.2. and RBC is quite low Question: what can prevent the anemia? Bone marrow biopsy showed no active CLL cells. Mystery asking for answers. Thanks.

[AussieNeil Partner Administrator]

Sorry to hear of your husband's second bought with autoimmune hemolytic anemia, particularly after his difficulty weaning himself off prednisone the first time. As I expect you appreciate, your husband has developed some B-lymphocytes with B-cell receptors specific to his red blood cells, which contain hemoglobin. So his red blood cells are attacked, causing his anaemia.

There are a number of treatment options, including using the drugs prednisone and rituximab. If these don't work, a splenectomy (spleen removal) generally works. Unfortunately knowing what treatment option will work is difficulty to predict. If a splenectomy is discussed, we have a few members who can share their experiences.

Hope this helps,

Neil

[Jm954 Administrator]

In addition to the haemolytic process, as it goes on, particularly if it's for some time, then the body can become low on the nutrients needed to make red cells. I hope your Dr has also prescribed folic acid and perhaps some other B vitamins (12 and 6) and checked your iron levels.

best wishes

Jackie

[charliegirl]

Dear Kulachick

I am sorry your husband has a recurrence of AIHA.

I also developed AIHA after being on ibrutinib for about a year, treated with steroids. I had several recurrences, both while still on ibrutinib and after the drug had been stopped for several months.

I was on steroids for prolonged periods but with some gaps.

My last recurrence did not respond to steroids or rituximab. My consultant started me on venetoclax and thought that bringing CLL back under control was likely to be the best solution.

For me this has worked to date (4 months into venetoclax) with only low levels of haemolysis now.

The most important advice I can offer is to ensure that your husband is assessed for prescription of a drug like sodium alendronate to prevent the osteoporosis that long term steroid use can cause. Whether this is necessary does depend on the length of time and dosage of prednisolone.

In my case it was not until I had had an osteopotic pelvic fracture that I was started on preventive treatment. It should have been started much earlier

Best wishes

Charlie Girl

[Quarry]

Sorry to hear - but good news is no CLL in bone marrow, so the production of red should be good. What was the difficulty in coming off steroids (prednisone) first time - this is the first line of treatment for AIHA and yes, the weaning off has to be done very slowly (so that is normal): what difficulties did he have? However, if it worked first time, there is a good chance it will work again - don't look a gift horse in the mouth even if it kicks a bit!

As Neil says there are second line treatment options, like cyclosporine and retuximab. Then more extreme ones like splenectomy (the spleen is the red blood cell destroyer in AIHA and we can live without a spleen) if he is generally fit-ish (ie it is not as scary as it sounds)

[hazelview10]

I had ITP which is

like AIHA but targeted against platelets. I also had large doses of prednisolone which eventually didn’t work and ended up with splenectomy in 2005, before Rituxan was invented but I had FCR in 2012 because my CLL was progressing rapidly. Apart from lifetime antibiotics the splenectomy seems easy to cope with.

Good luck, John