Dodger47 Update

[Dodger47]

Hi everyone. Just wanted to update those that responded to my plight of CLL/AHIA and COVID and seek additional thoughts since, at this level I have low expertise.

I am still in the hospital (15 days now) because my hemoglobin will not stabilize. I get blood transfusions and hemoglobin goes up some, tHen drops back down. I have had nine units of blood. This is my 3rd time having this but in the first two I fairly quickly responded to high doses of prednisone. This time the prednisone has made no difference. (100 mg).

I am on V and O treatment, they have given me 2 rounds of IVIG, and today decided to try a dose of Mesoprednisone(?)

My hemoglobin is 6.7. It had been 7.0 after a transfusion Two days before. The Doctor team is baffled but still believe they are on the right track. They believe I have warm AHIA but are checking to make sure cold is not involved as well. Obviously, I am frustrated and concerned. Any thoughts on what is going on would be very much appreciated. Dodger47

[SofiaDeo]

Methylprednisolone is a different steroid than prednisone, and can be given by injection as well as orally. Sometimes docs try different steroids; patients can respond differently to one over the other. It's considered "more potent" so instead of giving higher doses of prednisone (which may cause increased side effects) a stronger agent is used. Methylprednisolone is commonly used orally, so it's not like it's unusual/worrisome to have it prescribed.

Was a bone marrow biopsy done before starting treatment, do you know the percentage of CLL infiltration or if there were other marrow concerns? If your marrow was heavily infiltrated, it will be harder to make adequate new RBC's if you are destroying them quickly. Even though the CLL is getting killed off & new cells are being made, it unfortunately may take a bit of time until things stabilize.

I am wondering if/when an erythrocyte stimulating agent may be considered. But you need functioning marrow for them to work, and if you are still destroying RBC's too quickly, I can see why the AIHA needs to be tamped down first.

I went through an AIHA last year, and unfortunately the tests they are running may take a few days to get results back. So you're kind of stuck in a holding pattern, until they learn more.

If the CLL is causing this, you've got to kill some off so the antibody production stops. You will make new healthy bone marrow cells, and stop producing the antibodies, so the RBC's won't be destroyed so fast. But this takes some time, it's not immediate.

I am told many with CLL who get a positive DAT (meaning, you have some autoimmune antibodies in your blood) rarely get it to go negative, even though the hemolysis stops and RBC parameters normalize. So don't get upset if that lab value doesn't change.

If you understand medical stuff, these are the things your docs are likely doing. If you don't speak medical, at least look at the tables of different tests. If you aren't getting better & the tests recommended by the American Society of Hematology as professional standards for the workup of AIHA, ask why some of them aren't being done.

ashpublications.org/hematol...

Ask what they are doing to "rule out" Cold Agglutinin Disease (CAD). Because steroids aren't used, but rituximab is. Ask if V&R may be a consideration; obinituzumab is not known, as far as I can tell, to improve lymphoproliferative disorders resulting in AIHA. This is another reason to look at bone marrow on a biopsy.

onlinelibrary.wiley.com/doi...

[Dodger47 in reply to SofiaDeo]

Thanks so much SofiaDeo. I discussed much of what you shared with the Doctor team and their responses helped me see I need to be patient because changes take place slowly. Also appreciated the resources to tables. You are a great resource. Best to you.

[Palmetto in reply to Dodger47]

When my husband had severe AIHA he was given infusions of Rituxan. Reversed it right away.