Something I learned about CIDP & ivig

    • Anonymous
      April 12, 2011 at 7:19 pm

      From the same pubmed article I referenced for a how much ivig? question. The part I learned is highlighted red-

      “[I]CIDP is a heterogeneous disorder of complex autoimmune basis which has been found to be treatment responsive in approximately 80% of cases.[SIZE=”2″]64[/SIZE] Intravenous immunoglobulins represents a safe and effective treatment for CIDP. [COLOR=”Red”]However, about a third of patients do not respond to IVIg.[/COLOR][/I]”

      64. Cocito D, Paolasso I, Antonini G, et al. A nationwide retrospective analysis on the effect of immune therapies in patients with chronic demyelinating inflammatory polyradiculoneuropathy. Eur J Neurol. 2009. [Epub ahead of print].

      The 64 is that required footnote part of quoting somebody’s stuff in the original article I read. You guys studied footnoting and remember it well, right? a joke, ok?

      Anybody else wanna question the math on this? I mean, if 80% are responsive, doesn’t that leave 20% unresponsive? Yet, ‘they’ go on to say 33% are unresponsive. Oh, I get it, the author said “about…” a third.

    • Anonymous
      April 13, 2011 at 1:10 pm

      Yuehan, I questioned the math also…but I never trust myself to get it right! Glad you came to the same conclusion…but still there’s a big difference between 1/3 and 1/5, no? In any event, that’s a lot of folk who are not responding to IVIG, and I was one of them.


    • Anonymous
      April 13, 2011 at 8:47 pm

      Hi Sharon,

      I’m having this eureka sort of moment. Maybe. The first sentence talks about treatment responsive- as in all treatments, perhaps.

      That leaves the red highlighted sentence and the IVIG it represents at 33%.

      I can buy that. If you had not replied I likely would not have re-read it carefully two or three more times.

      Thanks and I hope your still recovering at back at work soon.

    • Anonymous
      April 13, 2011 at 9:16 pm

      1-dosages as in ‘adequate’ dosages were not mentioned. As many here know, some docs are very scroogelike when starting one out on IVIG.
      2-Dosage amounts and of the correct brands as well are mitigating factors in whether one IG product might work better than another… I’ve not looked up the reference but I do recall that about 7 years ago, there were more brands available and several incuded more of some IG sub-immune particles that many could not tolerate.
      Most important in all this? IS that most docs, hospitals or infusion services never report adverse reactions! It is up to the patients.
      Most simply give up as they fear it’s too hard to report the reactions [I HAVE reported, and it’s EASY!] or they fear a ‘retribution’ by either the docs or the providers. I feel it’s essential for safety purposes.
      Usually most patients ‘don’t respond’ because the doses they are initially given are simply not adequate loading doses or maintenance doses. Since I’ve started on IVIG that ‘response’ rate # hasn’t really changed at all? At about 30-35%…but why not? Has never been adequately researched nor explained. Unfortunately the available alternatives are very few and far between, all with possible minor and MAJOR consequences for the long term.
      I will say, that my initial first doses? I responded to very well! And, unfortunately my doses have had to increase as my immune system has built up a greater ‘rebellion’.
      As for getting any right dosage? Read the ‘full prescribing information’ then? Do the math! Not enuf? Ask why not the rite amount? At times a doc’s being stingy at key times is an invitation to prolong the whole issue, which if given in a timely and proactive manner? Could slow or stop things in their tracks!
      Unfortunately, most of us get to the IVIG too late to reverse all damages, but they can be restored. I was partially restored [so to speak] until 2 years ago when an accident resulting in other issues sent me backwards big-time. I keep hoping and have faith that I can ‘get back’ more than I have now!
      I hope you too will try and have hope and faith as well.

    • Anonymous
      April 14, 2011 at 3:19 am

      Treatment may not be exclusively IVIg. It could include steroids, plasmapheresis, and maybe immunosuppressants.


    • Anonymous
      April 14, 2011 at 9:58 pm

      homeagain- I agree, completely, about inadequate doses as a reason for IVIG failure. That could be it’s own subject. I’ll let you start it. It deserves it’s own thread.

      Learning that 30% of us may not respond, at least theoretically, regardless of the dose or the frequency of IVIG was the point.

      ~markens- The devil in the details is exactly right.

      That is precisely why I was having the Eureka moment. It was far to easy to read a study focused on the use of IVIG and conclude that every statement was solely about IVIG. As you pointed out ‘treatment’ encompasses much more than just IVIG. Still, it leaves a 20% failure rate in spite of all treatments types, doesn’t it?

      Now, I’ve learned twice as much. A CIDP treatment failure rate of 20% overall and of 30% for IVIG!