After round of bendamustine/Rituxan after 2 year remission from Gazyva/clorambucil
hemoglobin dropped from 10.6 to 7.5 in one week. Blood transfusion dropped after 5 days to 7.1 Husband has antibodies warm auto antibody I believe he has
autoimmune hemolytic anemia. Doctor wants a bone marrow biopsy instead. Has anyone else experienced this?
Anyone else? Yes-- it was between the 3rd and 4th Rituxan monotherapy infusions. All had been going well with WBC and ALC in decreasing into normal range (WBC had started >320), and acceptable Hgb, Hct, and platelets. The drop in Hgb and Hct was dramatic and sudden. (Unfortunately I am without access to the numbers right now, but the drop was enough to cause light-headedness on minimal exertion). My doctor was very concerned and wasted no time. There was a barrage of stat blood tests and the dx was made in the hour before my 4th infusion. I was slammed onto high-dose Prednisone at 1 mg./kg., which reversed the AIHA and in 3 days the Hgb and Hct were coming back up. Before long the Hct had climbed to 51 and required therapeutic phlebotomy to reduce stroke risk. The taper off the Prednisone took almost eight months and the side effects were significant. Back pain problems were revealed as compression fractures and antherolisthesis in 2 vertabrae. I came down with shingles on my face and right eye. It took a very adept neurologist to diagnosis steroid- induced myopathy when I had become dependent on a walker for any steps. The myopathy blessedly has resolved but I have lost 2 in. in height, have diminished acuity in the right eye, and have limited walking range due to low back pain. But, my Hct seems permanently above 48, and I feel well. In light of my experience, I would be concerned that your doctor is not investigating right now.
Wishing you a better experience than mine-- Paula
I am so sorry for your extreme issues and serious side effects to the steroids. I so appreciate your fast response.
Husband had all signs, light headed, shortness of breath, and no energy. I knew he had autoimmune issues because he has mild vitiligo which is an autoimmune where melanin is attacked and he develops white patches on his skin. I knew he had antibodies when they typed and cross matched a few years ago and they could not find compatible blood. Also have been in the medical field for over 45 years. The nurse practitioner said they would do a panel since I brought it up (sigh) but the doctor wants a bone marrow biopsy to determine whether or not the CLL is crowding out since he had a significant amount on the previous. Same as you his ALC dropped to well within normal limits in the first week. He did have to have Zarxio in two rounds this month as well. He had two units of packed cells Friday. Anxious to see what results are tomorrow on blood work.
Thank you again and all best wishes for your health to improve!
Fingers crossed for you. My cancer doctor is a hematologist. Maybe that was the difference. The blood tests she ordered to confirm AIHA did not seem exotic. They were done in her local lab, and she had results back very quickly.
Paula
Hi I wanted you to know we got the blood results back today and he does have AIHA! The direct Coombs test is positive for polymorphic and IGG. Now have to wait until Monday to talk with the doctor and get him on the right track and start corticosteroids. It was at my insistence he do the test when he doubted this could be it. Thank you again for encouraging me to prod the doctor to get this done. I took over a week now it is a Saturday and won't be able to discuss until Monday. Two more lost day when he could be getting better. Thank you again.
Thank you for your update. I predict high-dose steroids in your husband's future. Curiously Rituxan is the usual first line therapy for AIHA, so developing it while on Rituxan is a big mystery.
Paula
Hi,
There is a simple test that will help establish whether or not your husband has AIHA. DAT or Coomb’s test. Here’s a link that might help.
labtestsonline.org/tests/di...
Thank you. Yes it was ordered but no results yet!
Thank you THG results in today positive Coombs
Prednisone coming your husband’s way by the sound of it! I wish him well.
Thank you. I think it will do the trick. I have some here at home but my husband want do anything without the doctor's approval - now if it was me....... 
Best to get the dose right but I can understand the desire to get on to it. Usual start point is 1 mg prednisone for each kilogram of body weight. I’m still taking 10 mg daily over a year after my last AIHA episode - reducing by 2 mg each month if all goes well.
Don’t stand so close to me!
Ibrutinib is not working any more 
New bloodwork
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