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Old Tue Jun 21, 2011, 02:18 PM
Lisa V Lisa V is offline
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Join Date: Aug 2006
Location: Waimanalo, Hawaii
Posts: 401
I'll let someone who has experience with serum sickness answer the first question. Ken was lucky and didn't have any either time.

As far as IST causing problems down the road, that possibility certainly exists. Any time you suppress part of your immune system you are increasing your susceptibilty to various opportunistic infections and diseases. That doesn't necessarily mean you are going to get them, however, and I think what you need to look at here are your options. With AA, there are no risk-free options, plain and simple.

Left untreated, the consequences are potentially far more severe. The odds of spontaneous remission without treatment are about 20%. Most doctors feel that you can get by with lowered T-lymphocytes (what the ATG/cyclo is designed to knock out) as long as your neutrophil count is high enough to take up the slack, but if your overall white count drops so low that you become neutropenic you are in far more danger. Of course this can happen during treatment too, but hopefully in that case it is just temporary, until the IST kicks in. By keeping the "bad" (auto-immune) T-lymphs in check, you allow the neuts to flourish (this is, of course, an oversimplification).

Additionally, if your platelets get too low, you risk serious injury or internal hemorrhaging. If your red count gets too low, you will not only feel very tired, you will be putting a strain on your heart. If you are being transfused, the complications that come with that (iron overload, building up antibodies) also have serious health consequences.

I'm not trying to scare you, just trying to put things into perspective. Some of this may be unavoidable no matter what you do. The fact that you feel fine now, and will probably feel sicker on medication, doesn't make it any easier. It's tempting to rely on that feeling, but it is misleading. If there were a better, safer option than ATG/cyclo, I'm sure everybody here would jump on it! Maybe someday there will be, but for now, I'm not seeing one.

Hope this helps. Good luck, whatever you choose to do.
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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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