Update.

[Jacksc06]

I have received a letter from my haematologist. It states that I have mild anemia which I knew it also says that there is significant Haemolysis and increase in reticulocyte count up to 293.2. Bilirubin raised at 30. Inflammatory markers near normal with a crp of5.7. All very confusing, having trouble decifering all of this. I would appreciate any clarification from anyone more learned than myself. Love and strength to all.

[Quarry]

Looks like classic AIHA symptoms (Auto Immune Haemolytic Anaemia) - this can be caused by CLL

CLL has tricked your body into thinking red cells are the enemy, so your spleen is destroying them (hence high billi and probably also high LDH and indeed swollen spleen (though I never noticed my swelling even though huge). Your bone marrow is now compensating for this destruction by increasing red cell production (hence high reticulocytes - one good thing is this probably means your bone marrow is in good nick). Signs anaemia is getting bad are yellow eye-whites, yellow urine and grey pallor to face. If really really bad, breathlessness on mild exercise.

Mild anaemia means your current red cell production is matching destruction. If so, you probably don't need treatment. Perhaps stable, but you need to keep a close eye on it. If HB starts dropping, you will need treatment

What treatment depends upon the state of your CLL. AIHA can be treated in isolation - usually first line is very high steroid dose for 6 weeks and then weaning off - this works in 2 out of 3 people. If fails, there are other treatments (including splenectomy: this has kept me stable for almost 10 years and counting).

[Jacksc06 in reply to Quarry]

Many thanks. I am on prednisolone 25mg x 3 per day for 3 weeks.

[Quarry in reply to Jacksc06]

2013 article in British Health Journal on CLL+ complications gives guidance on AIHA first line treatment as 1mg/kg/day for 3 to 6 weeks. So you at short end (before v gradual weaning) and I will leave you to check dose! Good luck

[Jacksc06]

Hi yes 24mg l. Thanks again.

[lankisterguy Volunteer]

Hi Jacksc06,

-

IMO- the other replies about AIHA are very likely the cause of both out of normal values & anemia, for you

-

Here are the basic definitions:

haemolysis: UK haematolysis, US hemolysis or US hematolysis

/ (hɪˈmɒlɪsɪs) / noun plural -ses (-ˌsiːz)

the disintegration of red blood cells, with the release of haemoglobin, occurring in the living organism or in a blood sample

Hemolysis or haemolysis (/hiːˈmɒlɪsɪs/),[1] also known by several other names, is the rupturing (lysis) of red blood cells (erythrocytes) and the release of their contents (cytoplasm) into surrounding fluid (e.g. blood plasma).

-

Reticulocytes are red blood cells that are still developing. They are also known as immature red blood cells. Reticulocytes are made in the bone marrow and sent into the bloodstream. About two days after they form, they develop into mature red blood cells. These red blood cells move oxygen from your lungs to every cell in your body. increase

Reticulocytes are a useful clinical indicator of anemias and bone marrow response to anemia. Reticulocyte count in a healthy person should be between 0.5 to 2.5%.[9] When a patient is anemic and the bone marrow is unable to respond, the reticulocyte count will be low.

-

Len

[Jacksc06 in reply to lankisterguy]

Thanks Len

[Ballyhoo777]

I'm just hoping this new treatment helps you feel better soon. Best wishes. 🙏

[Jacksc06 in reply to Ballyhoo777]

Thank you.

[SofiaDeo]

I also am having an AIHA problem that reared up earlier this year. I'll do a post when I have more data, but, I'll comment that I discovered an old (1958) case report of an acute AIHA thought to be from an acute herpes simplex infection.

AIHA is known to be caused/aggravated by certain bacteria (the Malaria one comes to mind) as well as viruses, notably Epstein Barr. Most of the acute illness caused by virus has been documented in children. However, I wonder if our altered immunity makes us more susceptible than standard immunity adults. If we perhaps react more like kids, in a susceptibility to AIHA.

I started taking my anti-herpes medication (valacyclovir) once a day and am feeling a bit better. My bloodwork has improved a several weeks into taking the med. My specialist said he hadn't heatd of an adult with CLL having AIHA directly attributed to herpes virus activity. But the improvement in my bloodwork & symptoms since starting the med seems to point to a possibility that this can be true.

I still have antibodies to the RBC's (DAP positive) but my reticulocytes are decreasing, as is my bilirubin. Have you ever had EBV, or any of the herpes/shingles infections? I wonder if your worsening AIHA is a number of things not purely CLL. Similar to how I had 3-4 minor respiratory irritants in the air a while back, that caused a lung problem when combined. I am eliminating drugs that can contribute to AIHA (I was taking scheduled ibuprofen for a knee problem) in addition to taking my antiviral. I am avoiding acetaminophen and diphenhydramine, and following my anti inflammatory diet more (was bingeing on chocolate last month, my bad). I will also get tested for EBV. I haven't been diagnosed with it, but my partner had it in high school. He's likely a carrier, I may have it in my system now.