Thread: Ratgam?
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Old Sun Nov 7, 2010, 01:31 PM
Lisa V Lisa V is offline
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Join Date: Aug 2006
Location: Waimanalo, Hawaii
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Originally Posted by Lamilu View Post
So if she gets through this and she doesn't see a change in her counts in 5 months from the ATG she got a month ago then what? What else can they do for her at her age? this was her second time around and she cant have a transplant. She has heart and thyroid problems too. This is SO frustrating.
That's a very good question, Susanne. I wish I had a very good answer. As you point out, there are other animal ATGs, usually reserved for cases where horse and rabbit haven't worked. They're not used very often, though, and I don't know how available they are. I remember one young woman on the Aplastic Central forum several years ago saying she'd had 7 rounds of ATG: 2 horse, 2 rabbit, 2 skunk and finally one goat. None of them worked until she had the goat, and that did the trick! I've never heard a similar story from anyone else, though (and I've never heard of beaver before this). It seems like most doctors don't want to keep trying after 2 failed ATGs.

There are also other possible courses of treatment: either high dose or low dose cytoxan, campath, rituxan, androgens, etc. Some of them are still somewhat experimental and would require being in a clinical trial. I don't think any of them has the same kind of track record as ATG, which is why they generally do that first. The Catch-22 there is that once you've had ATG, it may diminish the chances of success for some of the other options. I'm pretty sure they won't do hi-cy if you've had ATG, and I'm not sure that would be available in Canada anyway. I believe the only place that does that is Johns Hopkins. I do know someone who has been taking low-dose cytoxan (in pill form) after 2 ATGs, though.

I've also heard from others who have taken a more holistic/naturalistic approach, either after bad experiences with ATG or in lieu of that. Some are hanging on with low counts, while others didn't do so well, but at least one made what sounds like a full recovery. It's hard to know, because everybody's AA is a bit different from the next person's, and if there are other medical conditions too, that complicates things.

At any rate, these are all things to talk to her doctor about. If they don't have a Plan B, you might want to get a second opinion, but for now, let's just hope the rabbit does what it's supposed to!
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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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