CIDP Update

    • Anonymous
      June 12, 2008 at 3:31 pm

      I saw the neurologist today – after 4 months of IVIG, then no help so 3 months of Prednisone and no help, then 5 treatments of Plasma Pheresis – agan, no help. So, he’s throwing in the towel and referring me to the big dogs – Milton S. Hershey Medical Center in Hershey, Pa…. hopefully they can help, but it’s been a slow battle with symptoms getting worse every week.

      🙁

    • June 12, 2008 at 6:53 pm

      Are they sure it is cidp and not ms?
      Dawn

    • Anonymous
      June 12, 2008 at 7:56 pm

      Sounds to me like Dawn Kevies Mom makes a good point… Maybe the doc’s need to retest you for other neuro probs… I can’t remember your symptoms, what are you going through… Did any of those treatments help initially? Good Luck deanop

    • Anonymous
      June 13, 2008 at 12:06 pm

      Classic symptoms – diagnosed in Sept 2007 – numb feet/hands, very weak legs, stumbling while walking, elevated proteins in spinal tap. None of the ttreatments helped even a bit. It’s just progressively been getting worse. [QUOTE=deanop]Sounds to me like Dawn Kevies Mom makes a good point… Maybe the doc’s need to retest you for other neuro probs… I can’t remember your symptoms, what are you going through… Did any of those treatments help initially? Good Luck deanop[/QUOTE]

    • June 13, 2008 at 1:42 pm

      Hi Ken,
      Well the elevated protein is a tell tale sign. How much ivig were you getting, and how often? Have you been dx with relapsing/remmiting, or progressive? Sometimes people have a very stubborn ( so to speak) case. maybe the ivig was too far apart initially and maybe it could have been done in conjunction w/ prednisone. I know Gabrielle gets ivig, solumedrol together maybe every 1-2 weeks. Beth, blkslt or something like that for a members name also gets pp quite often and I think might be on something else as well.
      The good thing is that your doc is not wasting time and is sending you to someone else. That is very admirable. Unfortunateley getting this cidp crud under control is a game of trial and error. I am glad you are going to another doc, good luck to you.
      Dawn Kevies mom

    • Anonymous
      June 13, 2008 at 5:11 pm

      I hear you on the “classic symptoms” , and it you got yours around mine… My question is was it classic progressive slow for cidp or quick for gbs diagnoses, and did you ever hit a low point, then improve at all within a short time or have you just gone downhill….. Hope I don’t sound nosey, but maybe from my experiences or others may be of help for you… I think I’ll do some archive dumpster diving on your story! deanop

    • Anonymous
      June 14, 2008 at 1:17 am

      You are not alone. I am having the same lack of response to treatments. I was diagnosed with CIDP 6 months ago. I had 5 days of plasmapheresis with no results. I started IVIG and on the 2nd treatment had a very bad allergic reaction which put me in the hospital for 5 days. I have now been on prednisone for almost a month without signaticant results. I would be very interested to hear what the “big dogs” 🙂 recommend. I am new to this site and look forward to learning from others experiences.

      Best of luck with your new doctors!
      Tracey

    • Anonymous
      June 16, 2008 at 3:58 pm

      Not sure of the amount of IVIG, but initially it was 2 bags each day for 2 days (4 hours each bag), then one bag once per month (for 3 months). Doc never said anything about relapsing or progressive… but so far it’s never relapsed and has been getting progressively worse. Jut had a call today from the medical center and they scheduled an appointment for July 10th and will do a consult and they also want to re-do the NCS.

      [QUOTE=Dawn Kevies mom]Hi Ken,
      Well the elevated protein is a tell tale sign. How much ivig were you getting, and how often? Have you been dx with relapsing/remmiting, or progressive? Sometimes people have a very stubborn ( so to speak) case. maybe the ivig was too far apart initially and maybe it could have been done in conjunction w/ prednisone. I know Gabrielle gets ivig, solumedrol together maybe every 1-2 weeks. Beth, blkslt or something like that for a members name also gets pp quite often and I think might be on something else as well.
      The good thing is that your doc is not wasting time and is sending you to someone else. That is very admirable. Unfortunateley getting this cidp crud under control is a game of trial and error. I am glad you are going to another doc, good luck to you.
      Dawn Kevies mom[/QUOTE]

    • Anonymous
      June 16, 2008 at 4:00 pm

      No improvement at all, just progressively getting worse.

      [QUOTE=deanop]I hear you on the “classic symptoms” , and it you got yours around mine… My question is was it classic progressive slow for cidp or quick for gbs diagnoses, and did you ever hit a low point, then improve at all within a short time or have you just gone downhill….. Hope I don’t sound nosey, but maybe from my experiences or others may be of help for you… I think I’ll do some archive dumpster diving on your story! deanop[/QUOTE]

    • June 16, 2008 at 4:51 pm

      Hi Ken,
      Without knowing your weight and the exact grams, I cannot tell if it is a loading dose. But I can tell you one bag once a month would not be enough to see improvements. Usually standard protocol is 2g/kg and that can be monthly, weekly, or bi-weekly. Then later you move to maint doses of 1g/kg and usually it is done every two weeks, some get it weekly, you have to start spacing slowly and working up so that you can notice a change in symptoms.
      Dawn