Looking for info on pulse IV treatments vs oral steroids

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Looking for info on pulse IV treatments vs oral steroids

Postby tina » Thu Jun 10, 2004 2:00 pm

My son has been treated for MPGN type 1 for the last 18 months. We thought things were going well, but now we're being told his protein levels are going back up. Something about protein and creatine being 0.55??? Our nephrologist isn't the best communicator sometimes and so we wonder about this traumatic step because my son freaks out just to have his blood pressure taken! Can anyone tell me about thie personal experience with IV steroids on a monthly basis? Or doctor tells us it will be more effective and have less long term side effects that upping the oral dose.

We also are looking for a straight answer on his long term prognosis. He had no scarring at his biopsy in November of 2002...

Thanks!

Tina
tina
 
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Joined: Mon Jun 07, 2004 1:40 pm
Location: Louisville, KY

MPGN Treatments

Postby Leetta Beachum » Mon Jul 19, 2004 5:49 pm

Dear Tina: I am from Charleston, West Virginia and visit KY very often. My 15 year old son was diagnosed three months ago and was treated with steriods the first 2 months. Recently our doctor lowered his steroids to 30 mg. every other day and added a drug called Cellcept (2000 mg. per day). He did not respond to the steroids, but did respond to the combination of the two drugs. He has alot less side affects with these two drugs combined. We got a second opinion from Cincinatti Children's Hospital and our doctor is consulting with Cincinatti and going by their protocol. You may want a second opinion. If you do not have good communication with your doctor, I would find someone else. This is a life long disease and you need to be able to communicate as well as understand. Our doctor has never spent less than an hour for every appointment that we have had with her. We go in every two weeks. She checks our son from head to toe and doesn't hesitate to explain in detail every question that we ask. Please let me know a little about your son, his symptoms, diagnosis and how you found out about it. If you want to email me directly, please do. I am at lbeachum@aol.com.

Sincerely, Leetta
Leetta Beachum
 
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Joined: Sun May 16, 2004 11:55 pm


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