Hi Carrie, Here's hoping you and Ana get the treatment she needs.
I have a few suggestions for you:
1. Ask the nephrologist how many GPA patients they see in a year. If it's a small number, ask them to consult with a Vasculitis specialist or refer you to one (if it's convenient). Cleveland Clinic (where I go), Mayo, Johns Hopkins, and some others in the northeast are good to great and have lots of experience.
2. Ask your doctors questions about their treatment plan - how do the drugs work, common side effects, how soon before improvement should occur, what to do if side effects occur.
3. Don't discount odd symptoms. This disease is sneaky and shows up in different ways. If something abnormal shows up, contact your doctor.
4. Keep records of doctor visits (get a written after visit summary), medications, symptoms (new or different), and lab results (I keep mine in an Excel spreadsheet). Take these with you when you see a doctor (especially a new one).
5. Before you visit a doctor, write a list of questions and concerns so you don't forget anything - and make sure the doc takes the time to address all your concerns during the appointment. (My docs seem to appreciate my preparation.)
I was on cytoxan for 16 months at disease onset. Make sure your daughter stays well-hydrated while on it. The metabolates are hard on the bladder. Also make sure she urinates whenever she feels the urge so the metabolates are expelled frequently.
There are some women of childbearing age that have been on cytoxan who are in this forum. A forum search of cytoxan and fertility should lead you to some useful info.
Cytoxan and rituximab are the two primary induction therapy immunosuppressants. It seems that azathioprine (Immuran) and methotrexate are better for maintenance. Prednisone is an anti-inflammatory. Its role is to help the patient to feel better. Ask your doctor about the impact of prednisone on your daughter's bones as long-term high dosages tend to cause the body to lose calcium which can lead to osteopenia or osteoporosis. I take daily calcium and vitamin D supplements and have maintained stable bone density.
Encourage your daughter to be as physically active as she can handle. I hope she doesn't forget to be a kid just because she's sick. With effective treatment and some willpower, she can lead a normal life. It may take some time to get there though.
Good luck!!
Pete
dx 1/11
"Every day is a good day. Some are better than others." - unknown
"Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD
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