I'd like to hear others experiences with AIHA.

[johnliston]

I'm currently being treated for autoimmune hemophilic anemia, I'd like to hear how others who have had to deal with this made out, what treatments they had, was it one and done or did it come back, does it get worse?

I'm currently being whinnied off of prednisone and am in the middle of 8 rounds of Rituxan. I'm wondering how well this worked for others and if it didn't work, what was next.

thanks john

[CLLerinOz Administrator]

Hi John

I'll leave it to others to describe their experience and what worked for them. Late last year, I shared a review article that summarised the treatment protocol for AIHA and it will provide you with a brief overview in the meantime.

onlinelibrary.wiley.com/doi...

CLLerinOz

Treatment of autoimmune cytopenias in patients with CLL

[johnliston in reply to CLLerinOz]

Thanks, good read

[cajunjeff]

Hello John, I had a rough ride with AIHA about 4 years ago. My doctor treated it aggressively out of the gate with cyclophosphamide pills, rituxin and steroids. That helped at first but it came back with a vengeance. My hemoglobin dropped to 7 and I was getting blood transfusions. I actually worried it might be the end for me, even though my doctor remained confident he could get it under control.

I got bad hives with rituxin so he switched me to ofatumumab. He added ivig infusions and that combo did the trick. My hemoglobin stays around 13.5 these days, which is fine, it’s not like I’m doing Ironman triathlons these days. I started ibrutinib once my AIHA got under control and ibrutinib is reported in studies to be very effective in controlling AIHA.

I worried for a while that it might come back and what would I do. Nowadays I don’t give it much thought, when and if it comes back I deal with it then.

I think from reading on here most people don’t have as much problems as I did getting it under control, so I think you should do fine. Good luck.

[johnliston in reply to cajunjeff]

Thanks Jeff

[johnliston]

I assume it's a result of CLL , but I'm in complete remission and my CLL is still very low (34/10,000 las fall). So I'm not sure. Apparently it was triggered by a virus infection in December.

john

[thb4747]

Hi John,

I’ve had AIHA three times so I guess it can come back! My bouts were 2006, 2013 and 2017 and each time my HGB went lower than the time before — 34 on the third occasion. First 2 bouts were treated successfully with Prednisone (Rituximab wasn’t available in NZ then), third time Rituximab was added to the mix. Just like cajunjeff my HGB hovers round 135 these days. I am taking Venetoclax though so I don’t know if that makes a difference.

I wish you well.

[FarmerJacks]

Had it, out of the blue, (so presumably brought on by the CLL) in Jan 21. My hemoglobin went right down to 33. Had six blood transfusions whilst they worked out what it was. Discharged after a week on big dose of Prednisolone steroids and I have been working towards coming off them ever since. I'm currently on 10mg of Hydrocortisone steroids. Coming off the steroids has not been without it's side effects however, probably because I have been on them so long.

[Nucleusman]

I had this twice-almost a by product of CLL. In both cases put on the same steroids as you starting on 40mg and decreasing over a period of time. Steroids made me a bit aggressive and continuous appetite. Then also had Retuximab which seemed to work. After the last episode my haematologist decided to put me on Calquence in October 2022. Since then no further episodes and was told at last visit I am in remission although still retaking Calquence. So maybe this is the pathway for you. The anaemia is horrible knocks you out and the steroids worse still

[mk2045]

I have had it twice. The first time my PCP didn't do a CBC on me even though she knew I had CLL, so the AIHA became very severe (my hemoglobin was 5.2). I was hospitalized and had 3 blood transfusions. However, I was treated with prednisone and Rituxan, as per my doctor at Mayo Rochester (though I live in Montana and was treated in my local hospital.) I started to slip into it again about a year later but it wasn't as severe. Again, I had pred and Rituxan. At that point, as per my CLL specialist at Mayo, I was started on treatment for the CLL. Although initially my doctor wanted to do O+V he thought that I should be on continuous treatment (rather than fixed duration) to keep the AIHA at bay. So, how am I doing now? Just fine! I've been on Calquence for a couple years and have not had another AIHA (though I know it could happen.) I'm grateful for doing so well. It is caused by of a protein, CD20, in the blood. Not every CLL patient has this, but AIHA can happen to others, e.g. someone with lupus.

[johnliston]

From all these replies and others off list it seems like a BTK inhibitor is what finally keeps it at bay.

john

[tesoro5858]

Hi John, I am sorry to hear that you are dealing with AIHA. Cajun Jeff's story is an extreme one, but one we must be aware of since it can happen to any of us CLLers.I developed AIHA unexpectedly in my 7th year of treatment-naive CLL. Luckily, I caught it early before my hemoglobin dropped below 9, so I did not need blood transfusions. My symptoms were very prevalent which makes me wonder how much worse I would have felt if I dropped as low as others have described who needed transfusions.

I am now 18 mos post obinutuzumab treatments, having received 6 cycles (9 total infusions). I initially took prednisone but was refractory to it. My AIHA is still in remission plus my CLL was knocked way back. My specialist said that I may ultimately need to treat the CLL if the AIHA becomes problematic, but I am not there yet, and hope to never be.

Best wishes and let us know how you are doing. There are a few of us AIHA CLLers that want to know about each other.

[johnliston]

Thanks for your reply tesoro, I just finished my 5th infusion of Rituxan and am currently down to 10mg Prednisone a day. My Hemoglobin are up to 15 where they haven't been in years, but my Haptoglobins aren't showing up at all. They did come back when I was on 80mg of Prednisone, but went back down as I was cut back. So right now we're sticking with 10mg for another week and will see from there.

john

[gardenman68]

To keep things simple, rituxan worked very well for me. The first treatment made me very tired and loopy, but after that, I was able to go back to work after each treatment. I did have an allergic reaction during the treatment, but it was countered on the spot and the treatment continued.

[MiaandAdu]

4 rounds rituxin and prednisone. Blood work was normal 3 1/3 months later white cell and lymphocytes are climbing. CLL is back