Recently Diagnosed with CIDP…next steps?

    • Anonymous
      February 17, 2011 at 9:17 am


      My name is Cory, I am 22 years old and I was recently diagnosed with CIDP on Jan 20th. My symptoms are tingling/numbness in my feet, legs and finger tips. Terrible balance and now my voice is completely hoarse. I also have terrible weakness in my legs, climbing stairs is nearly impossible.

      Shortly after I was diagnosed I started IVIG on Jan. 25th-29th. It didn’t seem to help at all, but they told me give it time. I recently passed out in my bathroom on Feb. 9th. They assumed that the IVIG did not work and now I’m on Plasmapheresis with my last treatment being tomorrow.

      I don’t feel a bit better with Plasmapheresis either……I know I’ve only done 4/5 treatments but I am beginning to lose hope that anything will help. I feel weaker now than I did before Plasmapheresis.

      What are your thoughts on this? I know many of you have had this a lot longer than I……… What is my next step?

      Thank you.

    • Anonymous
      February 17, 2011 at 11:10 am

      Hi Cory,

      I’m a GBSer and honestly don’t know a lot about CIDP. I just wanted to welcome you to the forum, though I’m sorry you had to get here by way of CIDP. ๐Ÿ™‚

      There are quite a few folks here that have tried many meds and other procedures. I expect you will receive responses shortly from the CIDP folks.

      Best of luck to you!!

      Take care,


    • Anonymous
      February 17, 2011 at 2:12 pm

      Hi there & welcome.

      I read an article in the new IGLiving Magazine (it’s free, you can Google it to sign up). The article was talking about IVIG dosage & how some dr’s don’t prescribe enough IVIG. They were saying that some people who don’t see results from the IVIG probably aren’t getting enough of the drug to make a difference.

      I’m wondering if you know how much IVIG you received per day. A loading dose is usually 2 grams per kilogram. I think the math is you take your weight & times that by 2.2 then divide it by 5 & that is how much IVIG you should get per day. But I’m terrible at math & I forget the formula often & have to call Dawn (Kevin’s mom) to ask her to remind me, LOL.

      What tests were done to diagnose you with CIDP & when did your symptoms start?


    • Anonymous
      February 17, 2011 at 2:44 pm

      I will look into what exact dosage I received for IVIG. My symptoms started in June-July 2010 and have escalated ever since.

      So far I’ve done…. IVIG and Plasmapheresis and they diagnosed me with an EMG test followed by a spinal tap to confirm…


    • Anonymous
      February 17, 2011 at 10:33 pm

      Sometimes it takes several treatments before there is an improvement.

      Also you need to take it frequently as it does not last a long time.

      I take it every month, some people have to have it every other day or every week.

      See if you can have a chat with a doctor that is knowledgable with CIDP and IVIG

      Good luck,

    • Anonymous
      February 17, 2011 at 10:38 pm

      Welcome to our world! I am new here too, dx Dec 10 and am on IVIg, going next week for treatment #3. If it doesn’t work for me, I am definitely considering a stem cell transplant. Alice (look under Members List, “A” page 3 at the bottom) has had one and you can see how she has done. Thru her pages you can find a link to another fellow “Jim” who has had one also. There is a guy I am following right now named Jon who is in Chicago getting a SCT.
      Worth looking into.
      Wendy ๐Ÿ™‚

    • Anonymous
      February 18, 2011 at 3:26 pm

      From my knowledge you can only be applicable for the stem cell transplant, if you have tried everything else……anyone else know anything about this?

    • Anonymous
      February 18, 2011 at 7:35 pm

      I did not show any improvement with IVIG until after my fourth monthly infusion at the loading dose of 2g/kg. And then it was very slow improvement. Only after two and a half years of monthly IVIG did my hands begin to improve. For some people, on the other hand, IVIG works almost immediately. Many believe that IVIG is the “cleanest” treatment, with the fewest side effects, so it is worth asking your doctor to continue giving it to you. I would also encourage you to look into the stem cell transplant program at Northwestern, as that has the potential to be a cure instead of a treatment.

    • Anonymous
      February 19, 2011 at 7:30 am

      I am so sorry that you are going through this. I was recently diagnosed too, so all the confusion and fear is still very fresh for me. I was diagnosed in Aug.2010. I had pretty good luck w/ IVIG. But just recently I had to have 7 doses in a row to get it to take effect. I don’t know why it’s taking longer to work this time. My doctor wants to start steroids along w/ the IVIG.
      I know it is scary when you’re not getting results. But hang in there. Something [I]is[/I] going to work – they just have to find the right treatment. And unfortunately, that takes time.
      BTW, did you get headaches when getting IVIG? Just curious. I seem to notice the IVIG working only after I get a really bad headache. If I don’t get a headache, I notice I don’t have as much benefit from it. Weird, but weird is the nature of this disease. :confused:

    • Anonymous
      February 19, 2011 at 9:39 am

      So sorry to hear of your current challenges with this disease. Almost all of us have been through the anxiety/depression that comes with our CIDP diagnosis. Some have struggled to find an effective treatment plan. The good news is that there are multiple treatment options; it just is a matter of trial and error. I feel confident that you will find a treatment combination that works for you. For me, it is 60g of Gamunex IVIG every two weeks, and 450mg of Lyrica every day. It’s no cure, and I still have numbness in my feet and some pain in my arms, legs, hands, and feet, but it’s tolerable and I am able to work and live my life with very little in the way of restrictions. You will adapt, and you will find what works best for you. We all do. Just hang in there, and before you know it, you’ll be telling a newbie the same thing.;)

    • Anonymous
      February 19, 2011 at 10:22 pm

      As far as the stem cell transplant, you only have to have tried 2 options in order to qualify now.

      Who to contact at NW Univ Hosp. if you are interested:

      Paula Gozdziak RN BSN

      Clinical Research Nurse

      Northwestern University

      Division of Immunotherapy Department of Medicine

      750 North Lake Shore Drive, #649

      Chicago, IL 60611


      (312) 503-1435 phone


      This is who to get in touch with for further info, but once again check out the ones on here who have gone thru it to really get a picture of how it works.

      [url][/url] this is the doc at NWern who does the SCT, take a listen to learn about it.

      Keep it all in mind as another option for some day perhaps.
      Wendy ๐Ÿ™‚