Platelets dropped from 229,000 to 97,000 in 7 weeks

[Tami]

I'm am new to this forum and am desperate for reassurance or guidance with my son who has SAA in remission. One month after being completely off the cyclosporine, his platelets were at 229,000 (December 27, 2009). He has been steadily loosing platelets ever since and on February 16, 2010 is at 97,000. His doctor's keep telling me "everything looks good," and that there would be no concern until there is a trend. In my mind this is at trendful as it gets. His Hgb has been hovering in the 9-low 11's since diagnosis, white count also 3-5's since diagnosis. Am I overreacting and the doctor's are under-reacting?? Starting to notice more bruising, bleeding gums, but told we don't need to check bloodwork more than every 3-4 weeks. Thank-you for any insight someone can give me!!!

Tami

[Hopeful]

Hi Tami,

I think you have good reason to be concerned. Your son's cyclosporine taper may have been too rapid or started too soon. Current thinking is that a very slow taper is most effective in preventing relapse.

Here is a section of an article from http://asheducationbook.hematologyli...full/2007/1/23
The article is titled "Aplastic Anemia: Pathogenesis and Treatment" by Andrea Bacigalupo

Cyclosporin dependence and relapse

Current IST regimens including CsA call for a full CsA dose (5 mg/kg orally per day) for 6 months; after thistime point, CsA is tapered, and it is unclear exactly (1) when and (2) how fast this should be done. A recent, as-yet-unpublished study of the Italian pediatric group has addressed these two questions. In this study, 42 children were divided into three groups: very slow tapering (<0.3 mg/kg/month), slow CsA tapering (0.4–0.7 mg/kg/month) and rapid tapering (0.8 mg/kg/month). The cumulative incidence of relapse was 8% in the slow/very slow taper group and 60% in the rapid taper group.19 Among patients who eventually discontinued CsA, the median duration of CsA treatment at full therapeutic dose (4–6 mg/kg) was 12 months (range 3–45 months), and tapering was completed in a median of 19 months (range: 4–64 months). In that study, the actuarial probability of discontinuing CsA was 21% at 5 years, 38% at 7 years, and 60% at 10 years, respectively.19 This study suggests that (1) it is safe to start taper CsA at 12 months of treatment (rather than 6 months) and (2) that taper should be very slow (less than 10% of the dose/month) for at least 1 year, to minimize the risk of relapse.

The good news is that increasing his Cyclosporine could stop the slide. Talk to your doctor soon (or a second opinion) about increasing his dosage.

[KimO]

I would second the opinion that there is reason for concern with your son's platelet trend -- and since you have more than one test there is definitely a trend. My daughter's platelets just dropped from 162 to 124 and while her hem also says that isn't a trend he went on to say that any drop is "worrisome" and wants her retested in two weeks. She is over two years out from treatment and off cyclo for nearly a year. I'm glad he's not waiting another month because if she needs to go back on cyclo I don't want to delay until her platelets are really low.

[Lisa V]

I agree with the others. While his Plts could eventually plateau, if the direction has consistantly been downward, then that certainly is a trend. Why take chances? I'm not sure why the doctor would not want to try resuming the cyclo, but that would be my first instinct. I'd also want to see tests more than once every 3-4 weeks.

[xujie1991]

Tami, When my quickly taping prednisone, his plt dropped from 168k to 110k in 3 weeks. At that time, I just prayed everyday. I knew your feeling. For his case, his SAA casued by hepatitis, when stopped prednisone, after two weeks, his ALT jump up from 6 to over 40. His plt was fluctuated between 110k -130k half year. And his plt just back to 150k after two years. For him, carrot juice is the key. Two years ago, I didn't know carrot juice, but I remembered I gave him V8 two and three time aday, after one week, his plt back from 110k to 130k, I don't know if V8 really play a big role there. But since I started carrot juice for him last year, I think he started to get better. I posted his story at http://www.aplasticcentral.com/forum...fid=2&tid=8921. Best wishes
Jie