Does anyone have autoimmune hemolytic anemia (AIHA) along with your chronic lymphocytic leukemia (CLL). I believe it occurs for around 10% of CLL patients. Any experience or knowledge about it would help. My Haptoglobin has gone from 39 in September to 14 this past week. As I understand it, when it is <6 my Medical Oncologist will recommend treatment. I am in watch and worry status since diagnosis in July.
Resulted on 11/30/2021 12:40 PM
Anti-C3b,d NEG
Anti-IgG POS
Standard Range
Haptoglobin 9/9/21 39; 10/22/21 18 L; 11/30/21 14 L
I have been treated for AIHA. Everyone is different, it took a while to get mine under control. Some doctors might start with steroids only. Others will take a more aggressive approach using rituximab, or a similar mab, and ivig.
Since for many of us our AIHA is triggered by our cll, the strategy for many is to get the AIHA under control and then threat the underlying cause, cll.
I started ibrutinib as soon as my AIHA got under control. My hemoglobin had dipped to 7 which required that I have transfusions. My AIHA was pretty bad, its hard to function with hemoglobin so low that your organs are not getting sufficient oxygen.
Some cases of AIHA can be refractory and difficult to treat while I think most cases do respond to therapy. I was worried my AIHA would be refractory, but my doctor encouraged me that he would fix it. I think it is very important to have a doctor who is skilled in treating AIHA. I think my doctor followed his instincts more than any medical manual. It was infusions of ofatumumab and ivig that eventually worked for me.
Ibrutinib and other btk drugs have a good reputation for controlling AIHA and my hemoglobin has been well within normal ranges for the last three years since my AIHA. If I were you, and I am no doctor, I would discuss with your doctor the benefits of treating your AIHA now and not wait until it gets as bad as mine was. Had I known more at the time, I think I would have pressed to have my AIHA treated before it got as bad as it did. I was first told I might have it in August a few years ago, but did not treat until November. Mine worsened rather suddenly.
In sum, I think AIHA is very treatable and can be controlled indefinitely, so long as our cll is controlled. Everyone is different though, thats why I recommend a specialist who has treated all sorts of AIHA . I presume most top cll specialists are also specialist in treating AIHA.
Good luck to you. Its been about three years for me since my AIHA and I have resumed working and exercising as I was before my cll and AIHA diagnosis.
Thank you great to have your knowledge and experience with this. I haven’t been able to keep up with the slowest runners during my Saturday runs but my RBC seemed to be the same low but not much different. I meet with my medical oncologist next week. Your information has really helped
I Agee. Similar experience. Treated with rituximab and steroids. The first time I had it I also had transfusions. After the second episode some months later I started Calquence after getting the AIHA knocked back. Doing just fine now.
I am being treated for AIHA right now. About a month after a quarterly blood test, I noticed that my energy levels were cratering and I couldn't maintain the exertion required to keep up in my exercise classes. So I went for a blood test and found that my hemoglobin was at 70.
I asked my doctor for a Coombs test because I was pretty sure about AIHA, and sure enough it came back positive.
In hindsight, I can look back on my labs and see that as early as this spring there were indictators that something was off.
I would recommend graphing your labs so you can recognize patterns and monitor tempo. My RBCs dropped from 4 to 2 between February to October in a straight line.
I was started on prednisone right away and was (and probably still am) a hot mess to some extent from it! It has been a slog. I started at 90 mg and it has affected my vision and cognitive function, among other things. I was previously a student, but I haven't been able to see or concentrate enough to continue with my studies, even though I'm only on 30 mg a day now. My hematologist decided to "pump the brakes" with rituximab and I'm 75% done with that treatment.
My blood numbers are almost normal across the board. My WBCs are around 50, where I was previously sitting around 250.
It seems that you have things well under control. You've recognized that something is off with your group runs and you have your medical team investigating. If you do end up needing treatment, it will be from a good place and you can likely avoid transfusion.
All the best to you. Hopefully you avoid an AIHA diagnosis, but if not, know that it isn't the end of the world. There is so much support here to get through this challenge.
hi Keepkicking , i just finished a month on 60 mg. of prednisone . i can;t imagine a 90 mg. dose ...my hemoglobin was 7.1 and it is up to a 8.5 now so it works . i gained 14 pounds .mostly water . edema in both feet and lower legs .and moon face ... i am skinny so it really looked serious.. sleeping only 1 1/2 hours at a time with 3 1/2 to 5 hours max sleep in 24 hours ... it did give me more nervous energy compared to my anemia but i felt fatigued and anxious at the same time . not nice but better then a blood transfusion ... after i dropped down to 40 mg a day i started taking dandelion root , a natural diuretic , now that i am weaned off the prednisone 8 days later my edema is all gone . i am headed to my oncologist today to see if i can start the acalabrutinib . thanks for sharing your challenging experience and the good results in the end .. it gives us all hope . blessings , james
Thanks James. I love that you highlight that these are great drugs that can work well, but the side effects are challenging. My hemoglobin reached 127 yesterday (!) and my husband was dismayed I wasn't more excited-- but he doesn't quite understand the price I'm paying to get those results. Fingers crossed for acalabrutinib today🤞🤞 😊
Hi,I’ve had AIHA 3 times — 2006, 2013 and 2017. First two times were successfully treated with Prednisone, third with Prednisone initially, then Rituximab. It’s always confusing to me when Americans use numbers but my haemoglobin went down to 66 the first time, 54 the second and 34 the third. In New Zealand treatment kicks in when you go below 80. My third episode occurred while I was on holiday in Alaska and the nurses couldn’t believe I survived. At 34 (I presume 3.4 in US terms) my organs should have been shutting down. As well as the Prednisone, I had 18 blood transfusions over these 3 episodes. My advice would be GET ON TO IT! Go well.
Many of us have had it - how it is treated varies between UK and US and also can depend upon where you are with CLL needing treatment. In UK, guidelines are that you treat AIHA first (especially if CLL not very active) to reserve the CLL treatments for when you really need them.
I was on prednisone (high does, then wean off), but CLL came back after weaning off (this happens in 1 in 3 cases), so I needed a different treatment. As I was young and CLL nowhere near needing treatment, I had a splenectomy, which has given me 8 years free from AIHA so far.
Your haemoglobin is below normal - it gets serious below 9 so keep watchful. As mentioned above, have you had a Coombs test? The other blood numbers I look at are LDH (remnants of destroyed reds - high if you over-destroying reds) and reticulocytes (baby reds - will be high if you are over destroying reds - a compensation mechanism). Both these give an indication on how bad the AIHA is (or if not changing, perhaps indicating you are at least stable).
Thanks everyone. I have learned a lot. My Coombs test has been positive since September as well as my reticulocytes. I couldn't find the LDH results. I am wondering what the side effects are from Rituximab. It seems to me that a splenectomy might be a good solution. I am tempted, but not sure my doctors would agree. I'll find out next week. I was on a very small dose of prednisone earlier this summer when my family doctor thought I had shingles- see my profile.
I would think of splenectomy as more of a last resort therapy for AIHA. Rituxumab is generally a well tolerated drug. Some people can get infusion reactions to it that are usually managed by slowing the flow of the infusion or pausing it and restarting.
Particularly for someone treating their AIHA for the first time, I think there is a good chance it can be managed with some combination of steroids, rituxumab and ivig.
cajunjeff is right about a splenectomy being the last resort therapy when you have AIHI. While people manage fine without one, the spleen has many important functions, such as filtering out red blood cells that need retirement from service, recycling the iron from those retired red blood cells, providing a reservoir platelet and blood supply to respectively try to prevent significant blood loss or replace that loss and in the event of a serious infection, a quick neutrophil boost to hopefully overcome the infection. For the last reason, it's common to go on prophylactic antibiotics for life after a splenectomy. Yes, a splenectomy can be a good solution to resolve AIHA, but other therapies are tried first and usually work.
In 2020 my CLL became active at the same time as an episode of AIHA (my doctor called this "just a bump in the road" at the time. Seemed more like a train-wreck to me). Double dipping the two problems is not recommended. I was in the hospital for nine days as my WBC was out the roof, my platelets were bottoming out, and my hemoglobin was low (in the 6's as I recall). I was treated with Prednisone and Rituximab in the hospital, then an additional round of 5 more treatments occurring about every 4 weeks. Today, I am mostly stable except for my platelet count (around 77,000) which, inexplicably continues to slide down (going from around 100,000 to the 77,000.) I tolerated the treatments well and had really no side effects to speak of from Rituximab. That being said, I appreciate the many comments about Murphy's law and CLL being somewhat of a roller coaster, as I have "experienced" cellulitis, skin problems, and other side "benefits" of this disease. Life does go on, differently, but with a new appreciation for the good health I once had and for modern medicine that allows me to look forward to each new day with hope and thankfulness.
Re steroids - needs to be high dose (1mg/kg/day are UK guidelines ) for 4 to 6 weeks and then gradually wean off over many, many weeks. This should be first line of treatment (especially if CLL no needing treatment).
Yes, rituximab is another treatment (what happened to cyclosporine - that was also on a treatment path in UK - maybe now outdated).
If splenectomy, the liver takes over all spleen functions (the liver is quite amazing) and yes, I am on prophylactic antibiotics (and folic acid). Good luck chatting to your docs!
Thanks everyone for sharing your experience with CLL & AIHA. I was grateful to have that insight prior to my meeting with my university medical oncologist/hematologist yesterday. He recommended that I start treatment for with rituximab and steroids in February 2022 when he gets back from vacation. I will meet with my local medical oncologist /hematologist today. I expect a similar recommendation. On another subject I am on 4 different antihistamines for the itch. If you get a chance read Between Two Kingdoms, a young woman’s experience with leukemia. She also had the cancer itch prior to diagnosis.
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