Developed AIHA while only slightly MRD positive

[johnliston]

A month ago I could jog 4 miles without even breathing hard. Now I can't even go a block without having to stop, panting heavily, and my legs hurting. Because I had a similar experience before I started treatment, I suspected my Hemoglobins were low.

I had an appointment with my CLL doctor and told her what I suspected. My labs came back and my Hemoglobin was 8.3, down from 13 about a month earlier. She ran a Coombs test to confirm and I do have AIHA.

She guessed it may have been triggered by a case of the flu I had a few weeks earlier, but I'm not sure because of the timeline.

I always thought that when AIHA occurred in CLL it was because our CLL B cells attacked our Red blood cells, but if I'm only slightly MRD positive ( 32 CLL cells per 10,000) I wouldn't think that would be enough CLL cells to cause this problem. If any of our wiser members have any insight on this I would appreciate hearing it.

Also, I am on 80 mgs of predisone a day and will be starting 8 weeks of Rituxan to treat. I would also like to hear from anyone who's done this about the problems they had and how effective it was. The 80 mgs of Predisone worry me seems like a huge slug.

Thanks John

[AussieNeil Partner Administrator]

Sorry to hear about your AIHA, though it's reassuring to know your CLL doctor is on top of it.Antibodies are produced by mature B plasma cells that are not affected CLL treatments. Also mature B memory cells, which also can quickly switch to plasma cells also survive treatment. It's possible the flu helped awaken existing memory or plasma cells to produce the antibodies detected by the Coombs test.

Neil

[johnliston in reply to AussieNeil]

Thanks Neil, Always good to hear your input.

[bkoffman CLL CURE Hero]

AIHA and other immune complications are only very weakly correlated with the level of disease. It is not the CLL cells themselves that directly attack the red blood cells, but rather their malevolent effect on normal T cells and other B cells that causes the problem.

[johnliston in reply to bkoffman]

Thanks Brian, I know you had auto immune problems and am glad you responded

[thb4747]

Hi John, for what it’s worth I’ve had AIHA 3 times over the years and each time I started on 80mg of Prednisone. I believe the calculation is based on your weight. All the best to you.

[johnliston in reply to thb4747]

Thanks for replying, I was hoping this was going to be one and done, but now I'm not so sure.

[thb4747 in reply to johnliston]

The tapering off takes months! And I was sleeping one or two hours a day at the beginning.

[schmitthj007]

John

I had a very similar experience except that I was uMRD for quite a while but still on treatment. Had both anemia and thrombocytopenia. I view it as an “imbalance” of your immune system that is caused by CLL but also by treatment reducing and influencing many lines of antibody producing B cells. Because of this I believe our immune system is ‘screwed up” which in some patients can result in hemolytic anemia and/or thrombocytopenia. This is just a picture and reality is certainly more complicated but the take home message is that in CLL the immune system is impaired with a higher risk of auto immune reactions. Had to stop treatment but still uMRD after almost 3 years and no recurrence of hemolysis

[johnliston in reply to schmitthj007]

Thanks for responding, good to hear it didn't cause CLL to progress.

[Paint-arty]

Sorry to hear you have AIHA. I have had that 3 times (each with many years apart) usually the haemoglobin had rapidly dropped to between 5-6.My treatment too was 80mg of Prednisolone initially for the first week, with a weekly infusion of Rituximab for 4 consecutive weeks, plus 4 units of irradiated blood.

The Prednisolone doseage was very gradually reduced to zero over a 3 month period.

So good luck with your treatment. I'm sure you will soon be back running as normal prior to having AIHA.

[johnliston in reply to Paint-arty]

Thanks for your reply I was wondering how long it would take to get off the sterods.

[64lusso]

Your treatment sounds very similar to mine when I had AIHA. I was at the end of my watch and wait phase as the CLL had started progressing very quickly. Also had a doc and hospital change in the middle of all this. I was on 75mg prednisone then we started a four week course of Rituxan while beginning to back off the prednisone. I had no noticeable side effects from the Rituxan and the prednisone worked great for keeping all my aches and pains away but sure didn’t sleep well. After the four weeks and good results we were able to start the CLL treatment with B+R and also started Ibrutinib at the same time. All has been going well these last 6 years.

[johnliston in reply to 64lusso]

I feel better knowing long term control is possible

[Keepkicking]

Hi John,

I've had AIHA twice now. The last bout (Sept 2022) was triggered by Covid.

My hematologist started with 50mg of prednisone and within a couple days I could tell it wasn't enough to turn the ship around and requested the same dosage (90mg) I received on my first treatment.

Although no one else has mentioned issues with prednisone, I find it extremely challenging to take. For example, last August I had an eye exam with no issues. Four months later, I had cataracts (at age 47.) I don't drive while on prednisone. Besides the vision issues, I also experience cognitive deficits.

I hope things go smoothly for you. Best wishes.

[johnliston in reply to Keepkicking]

Thanks for the warning

[Allenby]

HI, iam on watch and wait. Since 2017. Since last January 2022 I have had three bouts of AIHA. Red blood count down to 80. Started on 80 mg prednisone last Thursday. Can just manage to get to loo and back to sofa. Dread climbing stairs to bed. Chest feels as though I have been running miles. Blood constantly pounding in my ears. Can’t make the shower . All very depressing. Husband and I are walkers and I can’t even make the kitchen. Repeat Blood test this coming Wednesday , just hope I can make it. Speak to consultant on Thursday. My husband has cancer which is well controlled. I don’t know what I would on my own . Fortunately I do know my daughters would help.

Feeling really sorry for myself today.

Sorry to sound so low.

[johnliston in reply to Allenby]

Sorry to hear yours is so bad

[gardenman68]

Hi John, Yes I was on rituxan as my initial treatment when my CLL returned. The first treatment was a little rough, and I slept the first day. The treatments after that were a breeze. I don't know anything about the other things you mentioned. Sorry.

[johnliston in reply to gardenman68]

Thanks gardenman, I have someone coming with me to the first infusion.

[gardenman68 in reply to johnliston]

Yes. Glad to hear that. My wife took me my first time, and because of covid, sat outside in the car and waited. Thank heavens she drove me home. She also took me for my second treatment, because we weren't sure what to expect. But it was unnecessary. After that I drove myself, and went back to work after. Good luck! I'm sure you will do fine.

[tesoro5858]

Hi John, I am very interested in your post and have saved it. In 2021, I developed AIHA but I was treatment-naive on W&W. CLL was progressing but not needing treatment. I was refractory to prednisone so I was treated with 6 cycles of obinutuzumab, which stopped the hemolysis and knocked my CLL way back. I am MRD positive at 0.04% CLL cells by blood flow cytometry, which is quite low (4 in 10,000). Seeing Brian Koffman's comment provided information to me about AIHA not well correlated with CLL disease level, which is the case with you. Could very well apply to me also.

Keep us informed on how you do with your treatment.

[johnliston in reply to tesoro5858]

I also thought it was associated with higher CLL counts

[brooklyn7672]

Hello John, I had Rituxan about 3-4 years ago. I had bad experiences with this but not every one experiences it. My husband had Rituxan and had no issues. Rituxan with the amount of Prednisone may be a challenge but I believe your doctor should know what's best. Good luck.

[johnliston]

I'm most concerned with first infusion