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Old Wed Oct 9, 2013, 04:28 PM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
Steph,

I hope these forums will be helpful to you and your brother. It's too bad you didn't find a French forum for AA too.

I'm glad your brother was able to get horse ATG. I've wondered how soon doctors in Europe would be able to make the switch, based on the evidence you mentioned.

It's ironic that cyclosporine, a drug that's used after kidney transplants to prevent rejection, can damage kidneys. When used with AA patients getting ATG it can also be dangerous to kidneys, but its immunosuppressive effects are a critical part of the ATG treatment. That leaves your brother two bad choices: cyclosporine and no cyclosporine. If he needs it now that doesn't mean he needs it indefinitely, so the key will be how soon he can get off cyclosporine or start tapering the dose. Tapering too quickly can bring relapses, however, and that's where the doctor's experience and expertise is very important. You'll see many forum threads here about tapering cyclosporine.

You, your brother, and the doctors will no doubt keep a close watch on your brother's kidney condition. The doctor may consider tinkering the dose to find the right balance. I suggest asking the doctor whether there are ways to minimize the risks (would extra fluids help?) and what alternatives there are (other immunosuppressants?) if your brother's kidney risk becomes too great.

Remember that your brother shouldn't eat grapefruit or drink grapefruit juice while taking cyclosporine. Grapefruit interferes with the absorption rate. That's a fact that my wife and I learned from other patients even before some of our doctors were aware of it! But keep in mind that information you collect from patients and online forums (yes, that includes what I say) isn't as reliable as what medically trained specialists can tell you. It's best to use sites like this one to gain a broader understanding of the patient experience and to learn about questions to ask the doctor and options to ask the doctor about.
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