does anyone know can rr turn progressive?

    • Anonymous
      August 8, 2009 at 12:46 pm

      I am reposting this because I originally posted it onto the bottom of a played out thread. so now my question is still can rr turn to progressive. I know with ms this is statistically the way the course goes. you start with rr and then eventually it turns to progressive over years. let me go into detail on my patterns. 5 years ago it came on like a brick wall. it would come on for about a week and go away mostly ( maybe a few symptoms lingered) for a month. back and forth for 6 months very “cyclical” and then poof it went away completely. now it is different. same symptoms but alot milder. I have good days and bad days good hours and bad hours but although milder, this time it is everpresent. I keep waiting for it to subside but it doesnt. I cant tell if the symptoms are getting worse, just that I was able to do more last month than I am now. it has been on for 3.5 months now. its like chinese water torture.

    • Anonymous
      August 9, 2009 at 4:02 am

      Hi, Linda.

      My CIDP turned from relapsing/remitting to progressive about three years ago. I started with symptoms in my feet in 1999 which I ignored until it started in my hands. I was finally diagnosed in 2001. From then until 2006 I relapsed every six to eight months, took a course of IVIg, and was good for another six to eight months.

      Then in 2006 I started a downhill spiral, and IVIg and then steroids didn’t stop it. I’m currently on a combination of IVIg and azathioprine and it seems to have it under enough control that I’ve been able to regain some function.

      It can be a problem differentiating between relapsing/remitting and progressive: some who have to have regular treatment to stay functional may actually be dealing with progression that’s held at bay by the treatment rather than the treatment stopping relapses. One key seems to be that a relapse may go into automatic remission without treatment, whereas the progressive will just keep worsening. Another is that between relapses a patient will be essentially well (except for dealing with residuals) whereas with progressive you just slowly get worse.

      Of course, one hard part of CIDP can be differentiating between good and bad days (or weeks) and actual relapses or treatment not working.

      Such a fun disorder!