How common is anaemia

[EmilyLondon]

Hello. My CLL is slow moving over the last 5 years and early stage. At the latest six monthly check up the locum consultant told me about autoimmune hemolytic anaemia and described it as a common complication of CLL. She said she had seen rapid onset cases.Advice was that if I had untoward extreme tiredness or dizzy spells indicating anaemia I should go straight to Emergency for a blood test.

My haemoglobin is absolutely fine at the moment. 145.

Anyone know how common this really is? Especially at such an early stage in the progression of this illness? I was wondering where to park this advice in my brain. Far at the back?

[Quarry]

You HB is great! So I would put it near the back! And in worst case, AIHA does not kick in overnight.

About 1 in 10ish CLL patients get AIHA. The CLL tricks the spleen into destroying red cells. First line of treatment is strong whack of steroids (works in 2 out of 3 cases). In my case it did not work, so I had my spleen out (painless and no complications after 10 years): also my CLL is still low level - it was the AIHA causing all my symptoms/issues and this led to CLL diagnosis.

In AIHA, as the reds are destroyed, HB will drop, and waste red products (LDH and Bilirubin) will rise. If measured (needs active request), reticulocytes (baby reds) will rise (I suspect you don't need this measurement yet, if ever). If your bone marrow in great nick, retics production can rise enough to almost mitigate the red destruction, so HB might not drop greatly.

Other signs you are haemolysing (destroying reds) are yellow eye-whites and urine, and a grey parlour to your face. And yes, if HB drops significantly, you will quickly get breathless doing (even light) exercise. But your regular bloods (eg LDH and Bili) should pick up something is bad before this happens

[EmilyLondon in reply to Quarry]

Thanks for this really helpful perspective.

[Keepkicking in reply to Quarry]

Quarry, you should produce patient education pamphlets!! That is a great/accurate summary of AHIA without sinking into the muck. Absolutely reassuring. 👏👏

[wakewatcher]

I am much less knowledgeable than the previous answer but I would also put this low down my worry risk. I have been mildly anaemic (10 .5 to 11) for 2-3 years before treatment and at the moment remain the same after treatment but I’m hoping for an improvement as it’s early days. I do get fatigue but don’t know whether that relates to the anaemia and I don’t feel I have to worry about rushing to emergency care with it.

[Nucleusman]

quite common often treated with Rituximab and more likely steroids

[Vizilo]

I’ve had CLL for 10 years and have always been borderline anemic. I started treatment with Acalabrutinib 3+ years ago and all my numbers are normal except for hemoglobin which remains stubbornly just below normal.

My cll specialist is not overly concerned since I have not suffered any side effects. He suggested iron supplements which don’t seem to have done much good. Otherwise, we just keep watching it.

[willven]

I have the less common CLL automimmune complication - Immune Thrombocytopenia with no other CLL symptoms. Platelets down to 6 at one stage. Steroids worked while I took them (not a nice experience!) but crashed as soon as I stopped resulting in a hospital admission. The problem is there is no agreement among the medics about how to treat. One haematologist proposed Retuximab and another: start CLL teatment with V and O. I went with Retuximab - so the same treatment as for patients with ITP with no CLL . My thinking was why treat the CLL if there are none of the usual symtoms. No ITP for 11 months now. We are now into a discussion about how to treat when/if the ITP returns. The options are: 1. Re-treat with Retux 2. Start on a TPO-RA (e.g Eltrombopag) 3. Start V and O. Anyone have experience of this?

[Booklover66 in reply to willven]

I, too, only have ITP with my CLL. Retuximab helped for a short while, high doses of prednisone worked but destroyed my tendons. In past two years I’ve torn meniscus, both rotator cuffs, bi-cep and now two gluteus tendons. I, also, had IViG several times but that only lasts 3-4 weeks and insurance didn’t like paying for it. . I decided on option 2 and am thrilled. Eltrombopag gave me too many UTIs so then switched to a bit newer avatrompoag (Doptelet in U.S.). I’ve been on it for 8 months and platelets have remained steady in 150-200 range, best in many years. Best to you.

[willven in reply to Booklover66]

Thanks. That's very helpful. Good to hear that you have responded well to Avatrombopag. Long may it continue. Your tendon problems sound very painful and distressing. Steroids are nasty drug and to be avoided wherever possible in my view.