Newbie- Dad with CIDP

    • Jgalassi
      August 27, 2022 at 10:31 pm

      Hello. My name is Jenna and my dad got diagnosed with CIDP in  May 2022 after having symptoms for 2 years. It has affected both legs, arms and neuropathy in his feet. He is getting iv/igs weekly with 500mls which they say is based on weight. He has seen little improvement after 8 sessions. How soon should you see results if the iv/igs are working?

      Does anyone know about any drug that has chemo in it that’s used to treat CIDP? Are there any affects?

       

      Thank you all for your help and assistance as I navigate this new life with my dad.

    • Jim-LA
      August 28, 2022 at 1:23 pm

      Here are two forum discussion links to some info that may help:

      40 days and no response to ivig – can it still work?

      Reaching out for my husband, who has been in the hospital for 5 weeks.

       

    • Jim-LA
      August 29, 2022 at 2:39 pm

      Here is a link to a good IVIg/SCIg dosage calculator. You can use the results to discuss with your Dads doctors:

      https://pbco.ca/IVIG_Dosing_Calculator.htm

      • Jgalassi
        August 30, 2022 at 6:07 pm

        Jim- LA,

        Thank you so much for all your answers, help and direction. This information you provided is very useful. I am just trying to learn as much as I can. It seems that the treatment for cidp is all trial and error. Would you say in most peoples cases they do improve? Maybe not get back to 100% but will live a better quality of life?

    • Jim-LA
      August 31, 2022 at 3:57 pm

      Although there seems to always be improvements, it varies and residuals can remain for many years. If your dad had the disease for a couple years untreated, there could be more residuals he would have to deal with.

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