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Old Thu May 2, 2013, 03:20 PM
KMac KMac is offline
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Join Date: Oct 2012
Location: Golden, Colorado
Posts: 103
Treatment for Low WBC in Aplastic Anemia

Hi all,

I am still fighting my nemesis, low white blood counts, 14+ months post-ATG. Fortunately, my red blood and platelets are holding in quite well, they are almost normal (Hgb 13.2, Plt 135). Unfortunately, my ANC has been trending down since the start of the year, taking a sharp turn for the worse at my CBC yesterday, where it was 560 (it has generally been between 700 and 1000). Yet I feel well (other than some fatigue), and I am not getting sick, even in a flu season for the record books, even surrounded by sick family members and sick people at clinic visits.

Further, my 12 month post-ATG BMB showed great improvement (20 to 30-fold more cellularity than pre-ATG), with a normal distribution of healthy white blood cells in the marrow.

So my crucial dilemma is, what should I do for treatment? I would love to hear from anyone else fighting AA (or another bone marrow failure disorder), who has had a good treatment response in terms of red blood and platelets, but has had to fight chronic neutropenia like I have. Specifically, I have questions in the following areas:

1) ATG - My doctor is considering a second round of ATG, or perhaps another immunosuppressant. I am open to this, but I am wondering if there is any data on outcome for this in my specific case, especially as ATG hits the white blood cells so hard. Has anyone started a course of ATG with their red blood and platelets at very good levels, specifically to deal with their chronic neutropenia?

2) Prophylactic antivirals, antibiotics, antifungals - I've been on 1600 mg/day of the antiviral acyclovir since before I started ATG last year. The plan is to keep me on this at least as long as I'm on cyclosporine, primarily to prevent shingles and related viral issues. Further, if my ANC does not rise, my doctor would like to restart me on a prophylactic antibiotic and antifungal ASAP. If I am not getting sick, I'm not comfortable with this. I fear adverse reactions to being on strong antibiotics and antifungals indefinitely as a prophylactic measure. Had anyone else had experience with taking (or NOT taking) these over a long term while chronically neutropenic?

3) Cyclosporine - My doctor had planned to start tapering me off cyclosporine at 12 months post-ATG, but due to my low ANC he would like to wait another full year to start the taper. I tolerate the cyclo fairly well, but it does give me high blood pressure and elevated creatinine (baseline 0.8, currently about 1.3), and my understanding from the latest NIH studies is that long term full-dose cyclo after ATG response had become controversial. Further, I wonder if there is any chance that the Cyclosporine (or for that matter the acyclovir, or my anti-blood pressure med amlodipine) could be contributing to my low ANC?

4) Neupogen - I was on regular neupogen for the first 8 months post-ATG - 1 to 3 times a week. My ANC responded well and quickly, but of course fell just as quickly. My order at the clinic is for neupogen anytime my ANC is below 750. But I have been refusing it lately. My doctor is OK with that, but wants to give it to me again if my ANC falls below 500. My concern is that my online research suggests neupogen is not indicated for SAA patients as a long term treatment. Has anyone else with SAA been kept on neupogen for several months or more to deal with chronic neutropenia?

...In short, at this point I wonder if any of the medications I am on contribute to my low white blood count. As such, a big part of me wants to begin tapering these meds, as opposed to starting on more of them. If I am going to start taking more powerful pharmaceuticals, I want them to be of the sort that have a fighting chance of fixing the root cause of my problem (such as ATG), not just temporary protective measures, such as neupogen or antibiotics, which have risks and dubious long-term value, especially when given to people who are not getting sick.

Thank you to everyone who read this very long post! I know I need a second hematologist's opinion, but figured I would start here.
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Kevin, male age 45; dx SAA 02/2012 - Hgb 5.8, platelets 14, ANC 200, 1% cellularity. Received ATG 03/2012. As of 03/2015, significant improvement - Hgb 15, platelets 158, ANC fluctuates around 1000, Lymphocytes 620. Tapering cyclosporine. BMB 20-30% cellularity.
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