Could this be autoimmune hemolytic anemia extr... - CLL Support

CLL Support

23,336 members40,042 posts

Could this be autoimmune hemolytic anemia extreme drop in hemoglobin 3 weeks after bendamustine/Rituxan

11 Replies

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?

Read more about...
11 Replies
paulabs profile image
paulabs

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

in reply topaulabs

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!

paulabs profile image
paulabs in reply to

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

in reply topaulabs

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.

paulabs profile image
paulabs in reply to

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

thb4747 profile image
thb4747

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...

in reply tothb4747

Thank you. Yes it was ordered but no results yet!

in reply tothb4747

Thank you THG results in today positive Coombs

thb4747 profile image
thb4747 in reply to

Prednisone coming your husband’s way by the sound of it! I wish him well.

in reply tothb4747

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....... :)

thb4747 profile image
thb4747 in reply to

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.

Not what you're looking for?

You may also like...

Autoimmune hemolytic anemia (AIHA), Immune thrombocytopenia (ITP) and other autoimmune complications and extranodal involvement in CLL

"Autoimmune conditions are common in CLL and are often managed in a distinct manner from primary...
CLLerinOz profile image
Administrator

CT scan after 9 weeks of Obi +Ventoclax. Is this normal practice in the UK?

I started Obinutuzamab on 29th June & have introduced Ventoclax last week to the 400 mg ramp up...
Fergusaims profile image

Doc said time to start Ibrutinib

On my way back from Mayo visit hemoglobin dropped to 10 and platelets dropped to 116. Doc said...
aremmick profile image

Treatment timeline

Husband's haemoglobin has dropped to 10.9 and platelet count is at 68,000. He is otherwise...
AstraP profile image

Worried that Ibrutinib is working?

My husband has been on Ibrutinib for 2 months....and his neutrophils dropped from 2.3 to 1.3 and...
kathymac52 profile image

Moderation team

See all
AussieNeil profile image
AussieNeilAdministrator
CLLerinOz profile image
CLLerinOzAdministrator
Newdawn profile image
NewdawnAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.