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Old Wed Jun 4, 2008, 03:50 PM
Hawaii Bill Hawaii Bill is offline
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Join Date: Jun 2008
Location: Waikele Hawaii
Posts: 100
Smile My experience with AA

Aloha everyone!

My name is Bill. I am 55 years old, married 22 years, with a 13-year-old son.

I was diagnosed with AA in late Nov 2006, after a few months of tests and transfusions.

In July of 2006, I was starting my training for the 2006 NYC marathon (I had walked the 2004 and 2005 marathons), and was feeling very strange. At the end of a 6-mile walk, I felt "empty". For several months prior, I had noticed the petechia on my ankles but thought they were just "age".

By August, I could barely walk and finally concluded that I had more than a temporary virus. I saw my doctor, who did a CBC. Later that day he called me and said "Are you sitting down?" He then told me my counts were all down. Hemoglobin 5.8, WBC 2 something, and platelets 8k. I was scheduled for a RB transfusion the next day (my PCP screwed up and did not order a platelet transfusion for a few days after).

The nurses in the transfusion were all amazed that I was still able to walk!

The first hematologist I saw did a pretty good job of ruling out other diseases, but it wasn't until he left and I got a new referral that I found a hematologist who knew what to do. The day after I saw him, I had a BMB done, and the results were a toss-up between AA and myelofibrosis. Since they had discovered I had Hashimoto's thyroiditis (another autoimmune disease) during the testing, the new doc tried treating me for the myelofibrosis using Prednisone, which I tolerated well. After 5 weeks, he did another BMB, and it was at that time he was able to conclude it was AA, because my cellularity had declined into the VSAA range.

I was admitted within days and had ATG and Cyclosporin, along with continuing Prednisone and taking daily Neupogen shots. I was lucky not to have any significant issues with the drugs, but since I was needing transfusions almost daily, especially platelets (one day the daily CBC actually showed *zero* platelet count!), the doc kept me in the hospital until my transfusion needs were less than twice a week.

On Christmas Eve, 18 days into the stay, I developed tachycardia from a life-long problem of atrial flutter. My heart rate was 150/minute all the time, and my cardiologist had me on Diltiazem to lower the rate. The problem with Diltiazem is that it interacts with Cyclo, and my doctor and I are convinced that it interfered with the AA treatment.

I finally got out of the hospital 2 days before the new year.

The treatment was pretty successful for a while. My platelets stabilized and the only time I have needed platelets since the treatment has been for BMB or other procedures. My WBC have been slightly lower than normal much of the time, and I stopped getting red blood in March 2007. My counts climbed up to a high of 12.7 Hgb, 49K platelets, and normal WBC by May of 2007.

I had a BMB 3 months after the treatment, and my cellularity had improved from basically nil to as much as 80%! We started the cyclo taper at that time, and now we think that, along with the diltiazem issue, the treatment relapsed.

In June of 2007, my counts started a slow decline. By September, I needed another RB transfusion, and have needed 2 units every 2 months since. My platelets hover between 20-29K, but I have had no problems with them at that level (as long as I don't get cut!)

In August of 2007, I was blessed to find a cardiologist who did something besides throw drugs at my atrial flutter. He was an electrophysiologist, and after one visit and an ECG, I was scheduled for a cardiac ablation. Fantastic! Since the procedure, my heart has not "gone disco" on me since. No more heart meds to interfere with the AA.

Today, I am looking at the next treatment to do, as my latest BMB showed a reduction to 10% cellularity.

It's been quite a journey. Reading about others' experiences with this disease makes me realize just how fortunate I have been.

I am scheduled to see Dr Paquette at UCLA later this month for a consult and possible clinical trial with Sirolimus. My hematologist thinks that I have the luxury of time to try a less toxic approach to treatment before undergoing a second round of ATG. I'm going to post on the AA forum about others' experiences with Sirolimus.
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