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Old Thu Aug 13, 2009, 06:48 PM
Lisa V Lisa V is offline
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Join Date: Aug 2006
Location: Waimanalo, Hawaii
Posts: 401
I agree that the first few months are the most difficult, even under the best of circumstances. The emotional adjustment to a diagnosis like this takes time, and the treatment is frustratingly slow in taking effect. It may be several months before your mother starts to see some solid improvement, but it is important not to give up too soon. ATG does have a good track record, but it is not an overnight miracle, and things may appear to get worse before they get better. This is not unusual, but in the meantime, the transfusions and antibiotics will buy her some time.

Another thing to keep in mind is the effect of all of the medications she's been given. Some of what she is feeling now may be attributable to that and not the AA itself. I assume she's getting Prednisone as part of the standard protocol. That drug in particular can make you very moody, irritable and irrational! Once that is tapered off, she may start to feel a bit more like her old self, even if she is still feeling tired from the low Hgb. Cyclosporine can also cause tremors and a host of other annoying side effects, so the level should be carefully monitored and tinkered with if need be. It seems like most of the people here have had to scale down their cyclo intake at some point, but they always seem to start it fairly high for maximum benefit.

It may seem overwhelming now, but there is light at the end of the tunnel. Our world crashed when my husband was first diagnosed and treated, but life has returned to normal now, and he's still going strong 5 years later.
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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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