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AA Aplastic anemia

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Old Mon Nov 19, 2012, 07:50 PM
KimO KimO is offline
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Catching up and article link

Well, we "celebrated" five years since Shauna's SAA diagnosis with her second relapse. This time she was still on cyclosporine, which was being oh so carefully tapered 25 mg every 3 months and paused if anything looked "off". Thankfully a return to full (300 mg twice a day) dose recovered her counts, but not before her neutrophils bottomed out at .28. As a result she ended up with strep that caused a tonsil the size of a golf ball, followed immediately by a virus that caused severe headaches and vomiting (and a trip to ER for a CT scan and spinal tap). I am so grateful to see counts nearly normal about 2 1/2 months after the first drop.

Anyway, the real reason of my post is to pass along a link to an interesting article:

http://www.biologynews.net/archives/...sclerosis.html

Although it is not about AA per se, it seems like any breakthrough in the treatment of autoimmune diseases may potentially have implications for AA as well.
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Kim, mom to Shauna, SAA 10/2007 at age 19, ATG/Cyclosporine 12/2007, end cyclo 4/2009, relapse 8/2010, and 9/2012, counts recovered on cyclo alone 300 mg/day x 2.
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Old Mon Nov 19, 2012, 08:35 PM
Neil Cuadra Neil Cuadra is offline
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Kim,

We'll take any technical advance we can get. The article says the new technique won't leave patients immunocompromised, which would be a big step forward. It's actually a technique already in early clinical trials, and this nanoparticle technique is an alternative means of delivery.

It's a real shame that Shauna had another relapse and that she had to go through so much before getting her white count up again. I guess she has to start that slow taper all over again, which must be especially frustrating for a young adult who wants to put it all behind her.

How low a dose of cyclosporine had she reached?
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Old Tue Nov 20, 2012, 02:03 PM
Lisa V Lisa V is offline
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Thanks for posting that article, Kim. Very exciting implications for all sorts of auto-immune conditions! I plan to share that with others.

Sorry to hear about Shauna's relapse, particularly when she was talking such a cautious approach to tapering. That whole process is such a stumbling block for so many people. I'm glad she was able to turn it around with just cyclosporine, though.
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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Old Wed Nov 21, 2012, 04:40 PM
KimO KimO is offline
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Thanks Neil and Lisa for your replies. Shauna thought her dose was down to 100 mg in the morning and 125 mg in the afternoon when she relapsed. I wonder if I was off about the "full" dose amount from two years ago because I can't figure out how we got from a total of 600 mg to 225 mg in two years by decreasing 25 mg every 3 months. I kept meticulous notes (spreadsheet) on all her CBC results but I'm kicking myself for not including specific cylosporine dosages. She has already decreased by 50 mg per dose this time because the cyclo levels in her blood are running too high, but so far CBC counts continue to increase.

Anyway, below is the link to an additional article about the development I linked earlier. This second article does a far better job of explaining exactly how the nanoparticles would be adapted to various autoimmune diseases. Apparently they have enlisted cooperation from the Juvenile Diabetes Research foundation and Myelin Repair Foundation to organize trials for Type 1 diabetes and MS. I hope that an organization like AAMDS would get on board as well.

http://vitals.nbcnews.com/_news/2012...mmune-diseases
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Kim, mom to Shauna, SAA 10/2007 at age 19, ATG/Cyclosporine 12/2007, end cyclo 4/2009, relapse 8/2010, and 9/2012, counts recovered on cyclo alone 300 mg/day x 2.
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