I was diagnosed with CLL just over 3 years ago and gave been on W&W since December last year when I was admitted to hospital with severe anaemia, after many tests and blood transfusions I was diagnosed with Auto Immune Haemolytic Anaemia (AIHA), I was discharged after 2 weeks with medication that included Prednisolone, Folic Acid, Aciclovir & Allopurinol. In May of this year I became very anaemic and was admitted again into hospital receiving 3 units of blood. It is generally thought that the CLL is triggering the AIHA and I’m now at the stage where treatment for the CLL is on the table because of the seriousness of how I’ll it makes me. Sadly there is no cure for either condition but I was wondering if there is anyone else who has been given this diagnosis especially if with CLL.
Thanks,
Wendy
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Wen_dy
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Hello: I had AIHI early in my SLL/CLL journey. I’m not sure if this condition is common with SLL/CLL but I’d say it certainly isn’t uncommon. My anemia showed itself right before I received my first BR chemo treatment in May 2018. I was diagnosed in Oct 2017. A couple of days before my first chemo infusion I received an afternoon call from my oncologist saying my counts were low and I needed to come in for a blood transfusion which I did. I then entered treatment and required three more blood transfusions during my initial chemo infusions.
The positive you should focus on is CLL treatment likely will fix your AIHI at least for a period of time. In my case I haven’t had any issues with SLL/CLL or AIHI since 2018. Although a recent blood test seems to indicate my anemia may be creeping back into the picture which likely means my SLL/CLL is coming back too? Can I ask how you found out you you were anemic in May?
Wendy I think your anemia likely will be controlled by your first line treatment. If your doctor thinks you should start treatment I wouldn’t delay doing so. Good Luck!
Hello Mark and thank you for your response, I was attending a regular outpatient appointment with my Haematologist in November last year, I had been feeling very tired and breathless on most exertion , perhaps it was denial or ignorance but I just put it down to ‘old age’, being unfit & a bit overweight but by just looking at how pale I was it was decided to do a bone marrow biopsy, lymph node biopsy, bloods (Hb of 50) and being sent to A&E where I was admitted onto a ward. AIHA was suspected and confirmed whilst I was an inpatient, I cannot believe how incredibly well I felt after the blood transfusions and the commencement of the Steroids. I believe the CT scan & PET scan also helped with the diagnosis, I was discharged after 2 weeks. Everything was going well up until May this year when I became more self aware of what to look out for and I started finding climbing the stairs difficult, I was becoming so breathless but this time I knew what to do and took myself off to A&E as advised by my Cancer Nurse Specialist. Thankfully only a week’s stay this time but needed 3 units of blood, back on the Steroids (which is a reducing dose) and feeling better again.My Consultant is closely monitoring me explaining that the CLL is probably triggering the AIHA and treating the CLL will be the next step with Venetoclax /Obinutuzumab , both drugs I was given info to read up on.
It does seem that although the AIHA is making me feel unwell it is the CLL that is the root cause. I am just hoping that this is the case and that I’m not constantly battling both conditions.
Yes. The CLL is most certainly the root cause of your problem. In my case cancer cells comprised over 90% of my bone marrow so they essentially crowded out my ability to produce red blood cells and ushered in AIHA. I’m a bit apprentice about my SLL condition as I don’t want to go through AIHA again, if I can avoid it. Thus, my desire to start my second treatment, whatever that turns out to be, a little earlier rather than delaying it as long as possible.
The V + O you are being offered is an excellent option. Good luck!
Hi Wendy i have CLL and it was AIHA which lead to me going into treatment 4.5 years ago. I am on the flair trial on ibrutinib and doing well. Going into treatment is always a worrying time, I know I was very anxious but so far so good. 🤞all goes well for you too.Ann
I also developed AIHA related to my CLL. I was on W and W and had no symptoms related to the CLL. I had similar treatment to you for the AIHA and also cyclosporine which is an immunosuppressant. However the AIHA kept recurring so two years ago, at the beginning of the pandemic my specialist decided to start treatment for CLL. I have now been on Ibrutinib for two years and feeling very well. I don’t have any side effects to the drug and so far no return of the AIHA. There are so many treatments available now for CLL that I hope you find one that sorts the underlying problem.
Hi Wendy, I’ve had AIHA 3 times — 2008, 2013 and 2017. Initial treatment was Prednisone but in 2017 I was also treated with Rituximab. Apart from having CLL there didn’t seem to be any specific reason for this condition to develop. One thing I noted was that my HGB went lower each time — 34 in 2017! I also noted last time that a loss of appetite and a change in my colour seemed to signal AIHA was setting in. I hope they get you sorted quickly. Back in 2008 I was awake for around 22 hours a day at the beginning of treatment.
Thank you for your response, I too remember on my first round of Prednisolone not sleeping and almost buzzing with energy, also an insatiable appetite. Thankfully those symptoms are more under control this time, gaining weight was one of the last things I needed to add to my things to worry about. I too now watch for lack of colour & also breathlessness as a sure sign the AIHA is back.
Hi there, yes I developed Hemolytic Anaemia in 2019 and was admitted to hospital for transfusions. I was then treated by my Haematologist with Cyclophosphamide and Rituximab which brought my WBC and haemoglobin back to normal. Since then the WBC is slowly climbing again and my haemoglobin level is also slowly dropping but this was to be expected as the Hemolytic Anaemia may return. I remain hopeful that it will not!
Yes, I have. The first time it wasn't caught until I was really sick and ended up in the hospital with 3 blood transfusions. I was there 6 days. My local hem/onc dr. consulted with my specialist at Mayo Clinic in Rochester (1200 miles away - I live in Montana) and I was treated with 4 infusions of Rituximab and prednisone. The infusions were over a 4 week period. We had hoped the AIHA would stay away, but less than a year later I had another episode, caught much earlier. No infusions or hospital, but another treatment with Rituximab and prednisone. However, this time, it was agreed that I needed to be treated for the CLL because that was the best shot at keeping AIHA at bay. I've been on Calquence for 14 months and doing excellent. Blood work pretty much normal, excellent hemoglobin numbers, good energy, etc. I would strongly suggest consulting with a CLL specialist. The Rituxan treatment is pretty standard protocol if a CLL specialist is involved, and with multiple episodes, treatment is advised.
Thank you, I don’t feel so alone now with this added diagnosis, plenty of info and support for my CLL but sadly lacking for AIHA, thanks again for your response and best wishes for your treatment!
I’ve always been perplexed that I hear CLL is not necessarily a cause for AIHA. I’ve never been anemic in my life so if CLL didn’t cause it what did?Diagnosed in 2012 and on W&W for almost 5 years when blood numbers starting advancing rapidly and Oncologist said treatment coming soon. Then a few weeks later the AIHA started, initial treatment with 75mgs of prednisone sure made me feel good other than rough time sleeping but didn’t do much to cure it. Switched to a month of once a week Rituximab which got me headed in the right direction. I had the same shortness of breath with minimal exertion others have described. I started BR and Ibrutinib right after that month of Rituximab and all has been smooth sailing ever since. Infusions were discussed but neither that or a hospital stay was needed so I feel extremely fortunate in that regard.
Wen_dy, I have not experienced this anemia. I hope it can be relieved soon and is no longer a health threat to you. I am glad you shared this with us. 🙂Sandra
Wen_dy, I have CLL, diagnosed in 2014. In 2021, I developed AIHA, which came about suddenly but I luckily picked it up early and did not need any transfusions. I had breathlessness, increased heart rate, and could hear my pulse in my ears. Now I know that those are symptoms for low hemoglobin. My CLL specialist prescribed prednisone but it did not work for me. I then had 6 months of obinutuzumab which stopped the hemolysis. My CLL has not been treated and I remain in W&W. I am 10 months post obinutuzumab and do not know how long the AIHA will stay in control. The good news is that my CLL is in partial remission due to the obinutuzumab.
Hi Tesoro , thanks for responding to my question ...i am 74 years old and i just found out that my schedule will be the same as yours was ... i have completed 1,2,8 then 15 next week .. unfortunately my bone marrow is not working after taking the calquence for 9 months .. i just had my second blood transfusion today ... hemoglobin is up to 6.8 and my platelets are 21 ... i am hoping and praying they will be better next week ... james
I had it. I am not sure which country you are in, as treatment options do vary. In my case, I suspect the AIHA effects dominated over CLL, as the event that led to by CLL diagnosis was too low HB at a blood donation clinic.
High-dose Prednisolone (followed by lengthy weaning off) did not work for me (as it doesn't for 1 in 3) - I relapsed so soon as I was down to 5mg/day.
I am UK and my specialist suggested a splenectomy as I was young-ish (well 53) and could easily cope with the op: she also wanted to hold back on CLL treatment until the CLL needed it (and so give me greater flexibility when/if that time comes).
I had the operation in Jan 14 (from which I recovered quickly - it is a lot less scary than it sounds) and almost 8.5 years later, I am still AIHA-free and living a fully-active life .
Thank you for sharing your experience, I too am in the UK and feel so much better to find other people with AIHA, I thought I was alone as there didn’t seem to be the same information as there is for CLL.
Unfortunately that does seem to be a lack of information and there is little information on CLL sites (proper ones, not google ones), even though 15% of CLLers get AIHA. You are rarer, as I think it is more common in males.
If you have questions though, as you can see a load of us have had it and can bring our own experiences. Don't hesitate to post questions!
The Coombs/DAT (Direct Antigen (blood) Test) is also used to detect autoimmune antibodies that attack red blood cells. ucsfhealth.org/medical-test...
There is a higher incidence of the autoimmune conditions Autoimmune Haemolytic Anaemia (AIHA) and Idiopathic Thrombocytopenic Pupuru (ITP) with CLL. Sometimes neutrophils can be targeted. For some reason, CLL disrupts the process by which B cells which target our own blood cells, resulting from the T helper cell mediated somatic hypermutation process, are normally inactivated. Strangely it's autoimmunity developing against blood cells that is the result. The inactivation process works when B cells develop antibodies that attack other body cells.
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