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Anyone diagnosed with warm Autoimmune Hemolytic Anemia?
Interested in anyone that has been diagnosed with warm Autoimmune Hemolytic Anemia and the treatment plan you are following. Was diagnosed last September after a routine visit to primary doctor for annual exam. Had no symptoms. Six months later, after 3 blood transfusions, many tests, Prednisone treatment, and 4 infusions of Rituxan, I still have a low hemoglobin. Still do not have any overt symptoms associated with this disease, other than occasional high pulse rate.
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@kitoibay2
You are correct, this is a strange disease. After 13 years of battling what we "assumed" was WAIHA, I insisted on a bone marrow biopsy. I also had a cat scan with barium plus contrast. So the good news is I don't have the dreaded disease!
I have myelodysplastic syndrome (MDS) with SF3B1 mutation.
Squibb Meyer actually has a medication specifically for the mutation that causes my symptoms', those that exactly match WAIHA!
Tomorrow I have an appointment with the oncologist for a game plan. It looks like my monthly retuximab and IVIG infusions will stop. As well, my $400.00/day Tavalisse pill will discontinue. Yahoo!
Ask your doctor about the bone marrow biopsy. Perhaps you will find a similar solution.
@nacimiento Hi, thanks for sharing your story. I would be interested to learn more about your treatment plan and lifestyle since 2020, if you don't mind elaborating.
I am a 60 year old male who was diagnosed in Sept 25 with warm AIHA after emergency heart surgery due to a growth on my mitral valve. I underwent prednisone therapy and one round of 4 low dose rituximab infusions.
My hemoglobin returned to nearly normal range, but as the prednisone has been tapered it's fallen back in the range of 10.
Then in December of 2025, I tested positive for Anti Phospholipid Syndrome (APS) , which apparently caused the growth on my heart. So, now I'm on warfarin for the clotting danger caused by the APS.
I'm trying to navigate my way back into health, researching treatments, modifying lifestyle for both the immune problems and the heart issues, and figuring out the next steps for treatments for both.
If you or anyone else in the Supprt Group have been treated at the Mayo, especially in Jax, for AIHA or APS, I would love to hear if you would recommend any specific Doctor or have any other suggestions for treatments or lifestyle.
Thanks in advance.
@anthoney
Hello,
I developed antiphospholipid syndrome (APS) following COVID. However, I am unable to take Warfarin because I also have von Willebrand disease type 2 and the Factor V Leiden mutation.
If you are interested, I have written several summaries on APS with references, which you can access here:
Diagnosis and Treatment of Antiphospholipid Syndrome (APS) and Covid
https://swaresearch.blogspot.com/2025/01/diagnosis-and-treatment-of.html
Antiphospholipid Syndrome and Endothelial Injury: Unraveling the Links with Complement Hyperactivation and Thrombotic Microangiopathy in Severe COVID-19
https://swaresearch.blogspot.com/2025/02/antiphospholipid-syndrome-and.html
Hope this helps.
@anthoney
Since 2020, I have continued on the roller coaster. My hgb has been as high as 15.3 and just recently at 7.2.
My treatment regimen has included rituximab every 8 weeks and IVIG alternating every 8 weeks. So infusions every 4 weeks. My numbers started to decline about 6 months ago. Nothing could stop the decline and I started to plan for the worst.
Then we decided to perform a bone marrow biopsy. There as some reason behind my AIHA not responding. And we found that while I had all the symptoms of AIHA, I did not prove positive on the Coombs test. So now I have a diagnosis of MDS with a specific SF3B1 mutation. It turns out this mutation is solely responsible for producing immature red blood cells. And, it turns out there is a med just for that mutation named luspatercept.
When my hgb lowered to 7.2, I got my first luspatercept. Then 3 days later, due to my symptoms, I had a blood transfusion. This all occurred about 3 weeks ago. My hgb is today at 12.1.
Today as I write this, I am getting my IVIG infusion. Since my numbers are mostly normal, they cancelled my luspatercept, scheduled for today as well.
My rituximab has been cancelled going forward, unless the numbers decrease.
Bottom line, my autoimmune disease is still destroying my red cells. For some reason, the now mature cells are lasting longer before destruction. My hematologist, oncologist and USC Norris Cancer Center, have no idea why all of this is happening.
I will take any win I get.