oral steriods vs infused

    • Anonymous
      April 19, 2007 at 7:24 pm

      Hi all,

      My son Cole is 10, dx with CIDP 6 years ago. He has been getting ivig for 4 years, right now weekly. He previously (3 years ago) responded fairly well to high dosage oral steriods. Dr’s decreased dosage after 1 year or so to 5 mg /day which he still gets. About 6 months ago we added solumedrol to weekly infusions. (Dr’s say less side effects with infused.) He does not seem to be responding. Has anyone else responded to oral but not infused?

      thanks

      Betty

    • Anonymous
      April 19, 2007 at 7:42 pm

      I asked Emily’s homecare nurse about this the other day. She said that most kids respond better to infused but she also said that every kid is different so it wouldn’t surprise her.

      I come from the belief that you do what works for each person individually & you forget about the “normal” response.

      Hope that helps some.

      Kelly

    • Anonymous
      April 20, 2007 at 5:02 am

      Cole’s parents. Long term oral steroids are treated with caution in children because of the risks of interference with growth and osteoporosis. Infused salumedrol has fewer side effects, perhaps the dosage needs rethinking. Might it be an idea to keep all Cole’s posts on one thread? It is easier for us to follow the story. DocDavid