[Lisa V]

My take on why IST isn't used much for MAA is that success would be harder to quantify. For SAA or VSAA patients who have undergone ATG/cyclo, if their counts improve to the point of no longer needing transfusions, that is considered a good response. That doesn't necessarily mean full recovery of counts. For some, it has essentially just thrown them from SAA back to into MAA. If being MAA falls within the criteria for success, from a doctor's point of view there may not me much of an incentive to subject someone who is already there to a potentially toxic treatment. It's all relative. The same counts that are so worrisome to someone who is watching them slowly decline would be greeted by cheering by someone who is working their way up from the bottom.

For me, the most important factor is "are you transfusion-independent?" If the answer is yes, then watch and wait seems appropriate. The point I was trying to make earlier about there being no advantage to waiting was based on your saying you might start transfusing, Marmab. Once you start having to do that, I see no point in putting off IST. It seems unlikely to me that it would just turn itself around at that point, so it would be better to treat it quickly and try to minimize the amount of transfusions you need to have. That's the whole point of doing it, so that you won't have to rely on blood products. Of course you will undoubtedly have to have some during the process, but the fewer the better is the goal.

On the other hand, as Hopeful suggests, there may be an advantage to trying cyclo alone at this point, just to see if it can turn things around enough to keep you off the transfusion train altogether. It may or may not be effective, but at least it won't interfere with ATG treatment if that's what you end up doing.

Before you put together a plan of action, however, it's important to have a dialog with your doctor. He or she may have other ideas. It's good to be proactive and go in with as much information as you can pull together, but I can recall several times when I went to Ken's appointments armed with the lastest tidbits I'd gleaned off the web, only to have many of them shot down. If that happens, try to find out what their reasoning is. Bottom line, they have far more training than we do and are usually looking at a bigger picture. If you have a good doctor, they will welcome dialog and active participation, but in the end, they are the ones responsible for deciding what type of treatment is appropriate.