We are at the Day Hospital today for regular infusions (IVIG and Zenopax). Dr. Argawal looked at his skin and says he has rash all over. To me, his skin looks much better and you cannot feel the rash all over, only in some patches.
She said she will prescribe the Protopic ointment,which is a topical ointment. (update: my insurance will not cover it, so we have to ask for approval which will take about 1 week) We will be back in 2 weeks and see how his skin is doing. If there is no improvement, we will need to talk about another option. I was surprised that he only has two weeks to resolve the rash.
His blood pressure with the small cuff was 153/98. With the medium size cuff it was 125/85. She is concerned about his high blood pressure (which is caused from the Prograff and Steroids) so she is prescribing a patch called Clonidine (catapres). The patch is put on the arm and good fo 7 days. The medication is absorbed into the skin. He is starting with a 1/2 of a patch. Since it was so high today at the Day Hospital, they are giving him an extra dose of Nifedipine (Procardia) (it was just 132/98) and will probably not let us go home until it goes down.
Clonidine works directly on the brain. It pretends to be an adrenaline-like chemical causing reduced levels of true adrenaline-like chemicals (noradrenaline, and serotonin). This is a simple explanation - its true effects are more complex.
So, this is what went into his body between 8am-12noon today:
Isradipine (blood pressure)
Prednisolone (steroid for skin GVHD)
Prevacid (antacid)
Benydryl (premed)
Hydrocortisone (premed)
Ranitidine (premed)
IVIG - Gamunex (boost his immune system)
Zenopax (suppress his immune system)
Clonidine patch (blood pressure)
Nifedipine (blood pressure)
There are two more oral meds but I just do not have the heart to give them. Some social worker will probably say I'm medically neglecting him and send me to jail.
He's doing great considering all that medication. He is feeling tired but he never goes to sleep at the hospital. I know he will take a nap on the way home. Right now he is sitting in bed drawing circles all over his note pad while watching Little Bear on tv.
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Wow, that's a LOT of medication. Hopefully that ointment will clear up the GVHD in 2 weeks. Maybe it means that it's just that good! Here's hoping, anyway...
Y'all are in our prayers!
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