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Old Thu May 22, 2008, 01:36 AM
sandra sandra is offline
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Join Date: Mar 2007
Posts: 35
Hi!

Sorry for the delayed response, I was away for couple of days. Thanks for the name, I would certainly look up that doctor.

My 6 year old son was diagnosed with vSAA on Nov, 2006. He had ATG in Dec, 2006 and became transfusion independent on Feb, 2007. Thankfully, he is doing well, and now we are VERY SLOWLY tapering the cyclosporine. If everything goes as planned, the whole taper would last aprox. 18 mo.

Since my son's diagnosis I researched AA a LOT, mostly scientific articles, I have access to an online library, so I can download pretty much every article that catches my eye on a MEDLINE search. I also read both Marrowforums and Aplastic Central websites, and some caringbridges and carepages, mostly children.

The answer to your question is I cannot say 12 - 18 mo is the ideal time. First of all, the absolute numbers (e.g 25 mg at 3 mo) are less important than percentages (e.g. less than 10 % at a time). Some patients require more than the standard dose of 5mg/kg to achieve therapeutic levels, so they start the taper at higher absolute numbers. I can tell you for sure, the subject of tapering is barely tackled in scientific journals. The article I posted is one of the very few that makes a strong statement (something along the idea of issuing a medical guideline) about the length and duration of the taper. The way I feel about taper is that is like a retraining of the immune system, over time the T-lymphocytes become less aggressive or some clone populations simply die off (the ATG knocks off 99% of them, but T-cell expand primarily by clonal mechanisms, you cannot get rid of them entirely). So it stands to reason that a long enough retraining period gives the body a better chance to adapt. BUT, the way to achieve this is using CsA, an immunosuppressant. So you have to have a trade-off. The CsA has immediate side effects for some people, such as kidney toxicity, increased blood pressure, etc. You seem not to be the case, and most of the people tolerate it well. However, there is always the looming threat of long-term side effects, in particular the increase incidence in bad mutations that lead to cancer. Sometimes you cannot say for sure is because of CsA (e.g. MDS might be the natural course of AA evolving over time), but other times is certain, like in higher incidence of skin cancer for long term users of CsA (this has been establish for kidney transplant patients, who take CsA for prolonged periods of time, sometimes for life).

One other thing that I could say, is that I read the stories of a lot of patients, and your doctor is by far the most conservative I heard of regarding CsA taper. I read heartbreaking stories, patients with a good recovery whose doctors attempted the taper too fast (sometimes in as little as 2-3 mo), or too soon (platelets at 40K) and who inevitably relapse. I had to convince our doctor (articles in hand) that we think is better to do it slower, thankfully she was very agreeable. So it is impressive to me that your doctor wants to do it so slowly. Is it too slow? As I said, I don't know, but we felt that with the very good recovery our son has had, and based on the conclusions of that article, 18 mo might be enough.

Can I ask you where are you treated and who is your doctor? My son is treated at UMASS, Worcester and we also consulted with Dr. Shimamura at Children's Boston before she left for Seattle. I had also been in touch by e-mail with Dr. Nissen (she works with Monika Fuhrer who is the leading pediatric AA specialist in Europe). I remember very clearly, that was one of the first things she wrote to me ( we were still in the first months after ATG, waiting for a response) "Don't worry, he has great chances to recover well, but it is very important to do a very slow taper!" :-)

Sandra
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