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Old Mon Aug 24, 2009, 08:58 AM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,406
Hi Jen,

Do you know why his bun/creatinine is elevated? Is he on cyclo? I've heard of other saying you need to really hydrate to keep the kidneys flushed when on cyclo. I can imagine it would be difficult to get a 4 yr old to drink a lot of water though.

Usually with Exjade, if you get a rash, they stop the drug until it clears and then start it back up at a lower dose. Most don't get the rash again. But I would be concerned about the creatinine levels before starting up Exjade. Since you usually don't get "symptoms" from early stages of kidney trouble, I would get weekly chem panels for at least the first month of Exjade therapy to monitor them. And then get them monthly.

Exjade effected John's creatinine levels after being on it for over a year so you really do have to watch that drug. He finally came off of it because three weeks after restarting it, his levels would go up again.

As far as getting is down....John used apple juice and sometimes grape juice.

Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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