• June 1, 2015 at 7:49 am

      Has anyone ever heard of a permanent remission from CIDP? Thank you.

    • jk
      June 1, 2015 at 7:54 pm

      Yes, I have heard of it. But…. There are too many variables including:

      1. Type of CIDP.
      2. time elapsed prior to diagnosis.
      3. time elapsed and type(s) of treatment.
      4. degree and extent of axonal damage- Related to 1 and 2 and 3 above.

      Anyway, no such thing as ‘permanent.’ At least not if you are still kicking.

      I have also heard of other, less positive, outcomes. For example, one study’s outcome includes this: “patients with a relapsing-remitting course with a drug-free period ranging from 6 months to 20 years”

      I suppose the patient who went 20 years prior to relapse initially thought their remission was permanent.

    • June 1, 2015 at 9:37 pm

      I was stricken in 2008 and the disease was still active in 2009. I have not had a recurrence since late 2009, thanks mostly to PE. Now that I’m in ‘remission’ I wonder if it will be lasting. The damage done to my Myelin and Axons seems to be more permanent. So, if I don’t get worse and don’t improve… I still cannot stand or walk.

      I just bought a wheelchair compatible Van that I can drive myself, without anyone with me. I’m getting some of my lost freedom back now. Maybe that’s a form of ‘remission’?

    • GH
      June 3, 2015 at 6:24 pm

      I am classified as CIDP, but my recovery has been all uphill since my hospitalization in late 2010. I just recently went off my last treatment, an immune suppressant drug, and so far I am still stable. That’s not long enough for me to use the word “permanent,” though. I just say I am stable or in remission.

      “CIDP” is just a name, anyway. People who are so classified can have very different experiences from one another.

    • June 3, 2015 at 7:54 pm

      Thanks everybody for your contributions. It’s helpful to be reminded of the variables and to stay grounded about the many differences that can be experienced. Many thanks!

    • June 4, 2015 at 2:49 pm

      Stem cell therapy. Check it out.

    • June 14, 2015 at 8:35 pm

      I am classified as CIDP. I had rapid onset, on a vent for 18 days, but I had 2 relapses, both within 4 months of onset. I was originally dianosed with AIDP and had virtually all of the symptoms of AIDP. They changed the dianosis after the 2nd relapse. I have always questioned the diagnosis of CIDP, but I have been in remission since 2009.

    • June 26, 2015 at 1:20 am

      I was diagnosed 22 years ago with 1 major relapse 7 years ago. Treated with plasmapheresis. Been then going on velvet. Been doing good. Now have terrible leg spasms. Neurologists had me trying anti seizure meds. Really tired. Anyone else have this problem?

    • June 29, 2015 at 7:03 am

      Good Morning,

      Anyone ever been told the 5 IVIG treatments that worked the last 5 relapses are now reduced to three? (CIPD PATIENT diagnosed twice once AHN then again by UPMC the insurance is UPMC.)
      A month ago this happened. My friend has been lying in a SNF for a month being told that if she doesn’t progress she will have to go to private pay.

      Yesterday she was admitted to the ER with blood clots in lungs and legs. In ICU after a battle to get the SNF to send her. She is on a heparin drip.

      Seems to be conflicting treatment plans between the UPMC doctor’s and her Nurologist that was treating her with great success prior and continues to want to do so.

      If anyone has herd of anything like this please share.

      Thank you – Lisa