After a struggle with autoimmune hemolytic anemia (AIHA) that extends back to March, I have finally gotten some good news: I am less Coombs positive than I was before.
The Coombs, or Direct Antiglobulin Test, measures whether there are antibodies to red blood cells (Bad immune system! Bad!), which leads to their destruction by macrophages. When I relapsed with AIHA in July, the test showed positivity for anti-IgG of 2+ and anti-complement of 1+. As of now, after a month and a half of steroid and Rituxan therapy, the anti-IgG is down to 1+, and the anti-complement has reverted to negative.
What does this mean? Well, combined with ever-improving red counts, healthy haptoglobin levels, and reducing reticulocytes -- what those things signify is discussed in that link above -- it means that I may, just may, be winning the battle with AIHA. Conversion to Coombs negativity, according to Dr. Kanti Rai, portends a much longer remission from this nasty CLL complication, and that is what I am hoping to achieve.
Dr. O’Leary, my hem/onc, wants me to stay on maintenance methylprednisolone for the foreseeable future, and so today I start my 4 mg maintenance dose. This is equivalent to about 5 mg of prednisone, which is standard in these cases, and which some patients are on for up to a year before their AIHA resolves completely. At a three or six month interval, he’s not sure which, O’Leary wants to add more Rituxan -- which he pronounces “Rye-tuxin” for some reason -- to goose the response.
As with anything related to CLL, there are no guarantees. The first test will be seeing if 4 mg is enough to hold me; we’ll do some blood work in two weeks to check the progress. (Fortunately, I have tolerated the steroids well at much higher doses, so one pill a day should be smooth sailing; moving back to two, if need be, would not be burdensome. The main side effect I have had from steroids of late is pimples on my chest. Go figure.)
What this could also mean is that I might avoid harder chemo for awhile longer. That would be the next step if steroids were to fail. Certainly, after my AIHA relapse in July, it was weighing heavily on my mind. But I am glad I didn’t panic and jump when I didn’t need to. (Here I followed my own Three-Day Rule, which dragged on to something like thirty days in this case.) While it is essential to stay on top of autoimmune symptoms and CLL complications, it also makes sense to use the least invasive method to treat them if there are no compelling reasons to use a stronger approach. The fact that I am responsive to steroids -- the first time around I was almost assuredly taken off of them too soon, which accounted for the relapse -- argued that steroids were worth another try when relapse came.
The overall state of my CLL was also not, I concluded, compelling enough to warrant harsher treatment. My CLL, in fact, is under pretty good control right now. My marrow is doing well: platelets are healthy, and my ability to pump out gazillions of reticulocytes (baby red cells) is a good sign. Nodes are reduced significantly, or as O’Leary puts it, I have less of a “bull neck.” My spleen is only mildly swollen (just the tip can be felt below the rib cage.) The liver, which became somewhat enlarged after my low-dose Rituxan earlier this year, is, according to O’Leary, “right where it should be.” My lymphocyte count is about 48k, actually down a few thousand from the previous test.
So, for the moment, I have achieved a reprieve. Marilyn and I will be taking a little trip, with some extra methykprednisolone packed away, not to mention prescriptions for acyclovir (in case of sudden shingles) and augmentin (in case of sudden infection) in my wallet. Such is the CLL (working) vacation, but I am glad to have one.
As it turns out, this was the calm before the storm.-- November 19, 2007
Over nine years of blogging since transplant for CLL (chronic lymphocytic leukemia) on July 1, 2008 - This picture, painted by son William, launched by blog and was originally painted as a way to remember me after I was gone. Now it just serves to remind...
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