Newly diagnosed CIDP

    • Anonymous
      July 30, 2011 at 1:24 pm

      I’ve been recently diagnosed with CIDP and have undergone IV steroid treatment which didn’t seem to make much of a difference. The doctor now wants me to receive immunoglobulin. I, of course, have many questions that I didn’t think to ask at my last appointment 🙂 Any advice or suggestions would be greatly appreciated.
      Thank you.

    • Anonymous
      July 30, 2011 at 5:33 pm

      Hydrate, hydrate, hydrate!

      It’s important to drink LOTS of water before, during & after an IVIG treatment. It not only helps to ward off possible side effects it also plumps up your veins for easier access.

      Also talk to your dr about premedicating with either Motrin or Tylenol AND Benadryl. Also ask about post medicating with the same.

      Find out where you will be receiving your IVIG. You can get it at an infusion center, hospital or at home. My daughter receives her IVIG treatments at home.

      Make sure the nurse administering the IVIG is experienced. Talk to your dr about the rate at which it should be infused. It’s important to start of very slowly & ramp the speed up at periodic intervals until you reach max speed. My daughter doesn’t go over 100 & she starts off at 10. She gets 20 grams of IVIG and her treatment lasts for 2 hours 45 minutes.

      If you have any other questions just ask.


    • Anonymous
      July 30, 2011 at 6:09 pm

      Thanks Kelly,
      Since I’m new to all this, it really helps to have experienced people give advice.

      I’ll be receiving treatments at the hospital which I think is good for now. Do you know how often people generally get this treatment after the initial course? The doctor didn’t talk to me about this but it sounds like it’s fairly often.

      Best of luck to Emily; she’s lucky to have a mom like you.

    • Anonymous
      July 30, 2011 at 8:30 pm

      Each person’s treatment plan is different. There is no way to say what your dr will order. If you search on the site, or even use Google, you will find Dr. Dyck’s (out of Mayo clinic in Minnesota) has a pretty good treatment plan for CIDP using IVIG.

      I think getting the initial loading dose at the hospital is a good idea. Then later I think it would be worth it to look into doing home care. It really helps with the stress levels to do the IVIG at home. It’s less invasive & I really like the idea of having 1 nurse who only has to take care of Emily. I just feel safer.

      In the hospital you will have to make sure you get pre-medicated. Not all hospitals & not all nurses are up to date on this info. You really need to take control & do not feel bad about it. I highly recommend to everyone to keep a binder with all of your test results, dr’s notes & IVIG info in it. You can request to get the sticker (which has the lot & batch #’s) off of each IVIG bottle used for you. Also ask what brand the dr has prescribed & make sure you stick with that one brand. Sometimes hospitals will use one brand one day & another the next. That is NOT good, in my opinion.

      And thanks for the kind words. I kinda think I’m lucky to have Emily as my daughter though. She’s an amazing kid!


    • Anonymous
      July 30, 2011 at 10:27 pm

      Thanks Kelly, I appreciate all the info and will look into it.