I am 8 1/2 years into my CLL diagnosis and turned 65 this year, I have had some recent problems with CLL cells appearing in some masses in both my feet and left ankle, but to have a biopsy last week they gave me 4 strong doses of IVIG to support my platelets (i have ITP) as well.
I am quite dismayed that i find myself in the. hospital suffering from hemolytic anemia after having lost about 85% of my red blood cells and having hgb go to single digits, rbc to 1.5 and Crit to about 15. Ive had CLL so long I have had 8 different types of treatment and as such, have antibodies up the arm which made my A positive blood a rather difficult match.
Six units of blood later I am not a quarter of the way back, and have started having some chronic heart pain which they are using dilaudid to manage, I don’t think I see transfusions as my only way back to I am getting concerned if I have a long term problem on my hands here,l
Thoughts and sharing experience would be wonderful!
Kevin S
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KevinCLLITP
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I had hemolytic anemia a couple years ago, it was hard on me. I started treatment of it with steroids, Rituxan and cyclophosphamide tablets. That helped for a couple months, but it came roaring back.
As I was allergic to rituxan they switched me to ofatumumab and ivig infusions. That got me under control and since then I am on ibrutinib which for some reason is known to both treat or trigger AIHA. I did have a few transfusions a,omg the way.
I assume they will try some combination of ivig, monoclonal antibodies and steroids to get your AIHA under control. If that doesn’t work they might consider splenectomy.
It’s hard to get people to understand how bad hemolytic anemia can make us feel. I was useless with my hemoglobin below 8. Even below 10 was hard. I have normal hemoglobin now, I found I was at least functional with anything over 10.
My doctor also prescribed folic acid supplements. You might want to check with your doc about that, every little bit helps. Good luck, I can say I know exactly how you feel. I was worried my AIHA was refractory, my doc kept coming up with new plans and finally one worked.
I had to have four high dose IVIG treatments due to a biopsy I had to have on my foot. I normally donIVIG once every six weeks or so. The IVIG was delivered through a fast protocol on 3 and 4 then I had the biopsy and over the next three days the HA took hold and I lost 85% of my red blood cells. Have had CLL for 8 1/2 years and treated 7x but nothing is as bad as this! Thanks.
I’ve had AIHA 3 times and each time my HGB has gone lower than the time before. Went down to 77, 62, and 34. These incidents occurred in 2006 — successfully treated with Prednisone; 2013 — initially treated with Prednisone but followed up with 3 doses of modified FCR and 3 doses of Rituximab; and, finally, 2017 in Alaska — treated with Prednisone followed by 4 doses of Rituximab back in New Zealand. (I wasn’t allowed to fly until I got back above 80). My HGB was 55 when I arrived at the hospital and they wouldn’t believe me when I told them they had to run with a near match rather than wait, as I’m almost impossible to match (O- with more antibodies than most doctors will believe). They wasted several days trying to find a match. However, whilst not happy I realised this was the result of caution due to the litigious nature of the country I’d fallen ill in.
A couple of the nurses told me they couldn’t believe I’d survived! No one seems to know what triggered these incidents. I’ve learned to recognise symptoms — breathlessness, loss of appetite and grey pallor. In episodes 2 & 3 I organised blood tests off my own bat which helped get treatment options going fairly quickly.
Kevin my husband was hospitalized on June 12th with AIHA. His symptom was shortness of breath, lack of energy and dark brown urine due to the hemolysis. We always knew he had warm antibody AIHA but it had never given him a problem. They gave him IVIG and corticosteroids without much response. Hemoglobin went down to 6.1 before we could get him two transfusions of PRBC's and Rituxin infusions along with Prednisone and now only a little more than 3 weeks after starting those treatments his hemoglobin is up to over 10. Not sure if the CLL needs treatment or not since his hemoglobin was completely normal in May. This seems to be the treatment regimen that worked for my husband and I hope you will have a strong recovery.
Yes, in 2006 I was diagnosed but by 2010 I needed treatment as my white cells had pushed my reds cells out of the way and my AIHA meant that I could not lift my hand above my head, so before i could start treatment with Ibrutinib I had to deal with the AIHA, which meant blood transfusions with twice cleaned blood, folic acid and steroids for three weeks which got me in shape for the treatment. I have been on Ibrutinib for ten years with very few symptoms and normal bloods for eight years, a life saver.
No,a bit of Atrial Friblation now and then. Pulse can rise to ninety five occasionally, blood pressure normal without meds but I take a blood thinner just to be safe, normal heart scans come back ok except when I am very stressed.
Yes, was diagnosed in September 2017 with CLL (age 59). W&W through 2018 until Christmas. WBC was doubling every 3 months by then and my Hemoglobin had dropped to 8 -- yes, I felt like crap all of the time. It did not help that I continued to work full-time, even while undergoing infusion therapy. My specialist determined I had AIHA and prescribed 8 rounds of Rituxan over 8 weeks. I also took 100 mg of Prednisone, which remained part of my regimen for 3-1/2 months, before I tapered off the dose for an addition 3 months. I was prescribed Folic Acid, Dapsone, & Iron, all of which which I continue today and will probably do so until my last day. My Hemoglobin slowly rebounded from less than 8 to 14 by summer of 2019, where it sits today. I began treatment for CLL (420 mg of Ibrutinib daily) when I finished up the Rituxan back in early March 2019. Today my blood markers are all very good and I feel almost "normal." At least as best I can recall what normal feels like. All of our individual situations are unique, so there is no guaranteed treatment regimen. But, AIHA is deadly serious stuff, so I wish you Godspeed in getting things under control. Ask lots of questions, especially about options, and, most importantly, be kind to yourself. All of us are survivors!
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