Saturday, October 30, 2010

Revlimid and autoimmune hemolytic anemia

When you come down with something like chronic lymphocytic leukemia, you develop empathy for everyone else who has it. And when your CLL triggers autoimmune hemolytic anemia, or AIHA, you become especially empathetic, for you have just joined an elite group.

Depending on whose figures you believe, some 5% to 11% of CLLers will come down with this red-blood-cell-destroying, potentially-life-threatening nonsense. It happened to me early in 2007. (For more details on what it is and how it's treated, read this post. The NIH has a rundown here.) 

I've had a bad time of it, a more severe case than most, becoming refractory to the standard treatments: steroids, rituximab, cyclophosphamide. As of 2009 it was getting so bad that I was relapsing -- in the form of severe bouts of hemolysis of red blood cells -- every few months, no matter what treatment I did. Save for a splenectomy, which is no guarantee of long-term success, I was running out of options.

Along came Revlimid. I have discussed AIHA and Revlimid (lenalidomide) in some recent posts, but the information was buried. 

I don't want to bury the lede here: I am now Coombs negative and have not had a bout of hemolysis since I began Revlimid in March. In my more giddy moments I wonder if I am cured of AIHA.

Revlimid, an immunomodulator drug, has evidently reset my immune system so that it is no longer making antibodies to my red blood cells, a process that leads to hemolysis, which is when macrophages attack those cells. My red blood cell count, along with hemoglobin and hematocrit, has been normal since shortly after I began Revlimid. The Coombs (aka Direct Antiglobulin Test) I had on Oct. 6 confirms that I am negative for those antibodies.

To the best of my knowledge, the effect of Revlimid on CLL-induced AIHA has not been studied nor reported. I believe it is potentially one of the hidden headlines in today's CLL news. Aside from my anecdotal experience, a leading researcher has also found instances where it has been beneficial. In response to an e-mail I sent, Dr. Asher Chanan-Khan wrote:

"I have some experience in context with AIHA. At least 2 patients treated with len while transfusion dependent due to AIHA, resolved their need for transfusion and at least 1 is alive without AIHA 3+ years. Although the numbers are small, it does suggest that AIHA can be controlled with control of disease with len."

What I am saying here to fellow members of the elite club nobody wants to join is this: Consider Revlimid. I was on 5 mg when progress started being made, so it probably won't require a huge dose to control the AIHA. Revlimid may be useful at the very start of your battle as the side effects are usually less problematic than those associated with the traditional first line of defense, steroids. 

There is, of course, no guarantee that Revlimid will work for everyone. There is one report of Revlimid actually inducing warm body AIHA in a woman with diffuse large B cell lymphoma. But that's not CLL.

I also have been on monthly doses of Arzerra during some of this period (ending two months ago). It is possible that the anti-CD20 monoclonal antibody also contributed to my progress, although it appeared to have little effect on the disease and we have now suspended its use. The fact that I was refractory to a similar drug, Rituxan, may explain why Arzerra (ofatumumab) appeared to be providing me with little benefit. 

It would be helpful if some researcher somewhere would undertake a study on Revlimid and CLL-induced AIHA; if the results are what I think they will be, Revlimid could become an important tool in the battle to control CLL, reset the immune system, and perhaps put an end to the scourge of AIHA for large numbers of patients.


Today is January 18, 2011. It has now been almost five months since I quit the Arzerra. Still no sign of AIHA or hemolysis, red counts remain in the normal range, nothing out of whack.


Anonymous said...


Could you please give us an update on the Revlimid? My sister is looking for treatment options and revlimid might be on the table. I find you blod really informative. Thanks for sharing your journey with us.


Anonymous said...

Hi David,
Thanks for posting your experience with Revlimid. As someone with ITP and CLL, I am wondering if Revlimid might be helpful with ITP too.
Sometimes these complications of CLL can affect quality of life more than the CLL itself.
I hope Revlimid continues to work well on your CLL and your AIHA for a VERY long time!

David Arenson said...

Hi, Barbara.

ITP may be a little more tricky. One of the more common side effects of Revlimid is a drop in platelets. But the drug has been given to Stage 4 patients with platelets below 100k and it has had positive results in some over time. Since it tinkers with the immune system and ITP in an autoimmune disorder, it might be worth experimenting with -- but it's obvious that you'd need to closely monitor things, probably with a weekly CBC, to insure that it doesn't make things worse.

Thanks for the good wishes!


David Arenson said...


Glad the blog has been of help. I'll be updating as I have time. This report on AIHA is one such update. I'll have a general update soon.

Please remember that my experience is anecdotal, just one of many, and your sister may have a totally different experience with it. Revlimid especially seems to provide a variety of experiences from what I can tell from the case histories of other patients. Anyone who uses it should be aware of the possible side effects and should keep close watch for symptoms.


Grateful said...

Glad to hear of your improvement.

Anonymous said...

Wow David--
I am so happy to hear of the success you are having with Revlimid! Rock on brother!

ms said...


Who are the top CLL guys?

There's a wealth of CLL information online but I think the patient community reads on without ever encountering a clear list of the researchers and practitioners setting the standards.

Reading your Revlimid entries with great interest.


David Arenson said...


I answered your question when you first asked it in the comments section of my "If pigs could fly . . ." post.



Matt Fogelson said...

David -

First and foremost, I want to wish you all the best in your ongoing battle. My thoughts are with you.

I worked with you when I was a teenager in the early 90's at Sunny Oaks Hotel. I worked in the kitchen there from 92-94.

For some reason, I told a story about my time at Sunny Oaks at lunch today..I went to the web to look for a photo to show my coworkers...and I stumbled across the Madoff connection and the articles/stories featuring you and Cynthia. It blows my mind. So much about my summers at Sunny Oaks is memorable, this just adds a whole new layer.

I watched the video ABC showed of the Alperns..I don't remember their faces, but I do remember the names.

I have no idea if you or Marilyn remember me (i was the very short jewish kid in the kitchen), but please say hello to her for me.

Matt Fogelson
Baltimore, Maryland

Anonymous said...

im in the same boat as you,but reading your experence has helped me, thanks

Anonymous said...

I had Revlimid and Rituximab at MD Anderson a few months ago. After 28 days of Revilmid I broke out in a horrible red rash that progreesively went from head to feet. They hospitalized me and after3 days of corticostrioids IV I started to recover, then a dose pak of corticosteroids and a cream for home use. Took three weeks to shake this rash and i had to drop out of the clinical trial. They said I was close to Stevens-Johnson syndrome.

David Arenson said...

There are no guarantees with Revlimid. Your skin issues have been seen in some patients. It's important to remember just how experimental all this is. We are pioneers in the use of new drugs (I prefer the term "pioneers" to "guinea pigs"). Some of us are luckier than others in terms of effectiveness and side effects. There is a randomness to it that appears to be unavoidable. Good luck in your CLL journey.