Time Between Relaspe

    • September 24, 2013 at 2:09 am

      Hi everybody just got done moving a heavy object and my legs feel wobbly and balance is also a little off. I just got plasma exchange done on 9/07/13 and am surprised symptoms are returning so soon. Is this to be expected, I had a month of time before symptoms came back last time, my neurologist doe’s not have me on any drugs to keep cidp down.

    • September 24, 2013 at 2:37 am

      I was on Prednisone while doing PE, so CIDP didn’t have much of a chance to become active again. Most of my Myelin damage is pretty severe and I cannot walk or stand. I require a Hoyer lift to get me in/out of my wheelchair.

      Maybe another member (GH?) might have had a similar experience to yours.

      I hope its only a temporary setback for you and the treatments continue to work for you so you can stay off the other drugs.

    • September 24, 2013 at 4:29 pm

      I did PE 5 days in a row every 4 weeks for several years. Did ivig every 3 weeks for years. last two years stretched out to 5 then 6 weeks and now it has been 19 weeks. All this over 19 years. The point is that for many of us a 3 – 4 week spacing is not unusual to stay symptom free and that you never know exactly what lies ahead. I never imagined 19 weeks and still going strong. Hang tight.

    • GH
      September 24, 2013 at 6:19 pm

      I still have wobbly knees almost three years out, but have never had signs of relapse. The only maintenance treatment I receive is mycophenolate mofetil (Cellcept) daily. Every case is different. I am surprised that you are not receiving any drugs. I was on prednisone for a year while transitioning to mycophenolate mofetil.

      Are you saying that your legs were fully recovered then got wobbly again? My wobbly legs are not due to relapse, merely incomplete recovery.

    • September 25, 2013 at 5:11 pm

      I relapsed 3 times during my rehab(s). My medical plan was to switch over to Azathioprine/Immuran at 200 mg/day from predisone (60 mg/day). I did have to gently ramp up (increase daily dose by 50mg/day every 3 weeks) to the 200mg/day on Immuran. I was only up to 100 mg/day on the Immuran when I had my last relapse in the first week of May this year. What the Docs noticed on the last relapse was that my recovery time rehabb’ing was real quick because of a dosage of IVIg. Then I went back & constructed a “Calendar” of my treatments starting in Jan. What I found was my relapse cycle was 30 days. Discussed that with my neuro’s who may or may not found that interesting. However, my medical plan was changed to add 2 day infusions of IVIg every 30 days. Two weeks ago Friday I was totally off of predisone & had my monthly infusion of IVIg. I have NOT used a wheel chair since mid May, and sine yesterday have NOT used my wheeled walker, plus using a small footed quad cane around the house. I also have been going what I term as “Freestyle”, i.e., no cane, just walking.

      So knock on wood, I have escaped the June/July/August/September relapse cycles. The “Plan” for me is to continue on this course until Jan, & then to switch to a one day IVIg Infusion Cycle.

    • Anonymous
      September 26, 2013 at 3:25 pm

      Hi Harry,

      My brother has been fighting this for almost 2 years now. At first he had relapses every month or so for 4 staright months, until he was put on PE for 3 times a week tappering of to 1 a month and now has transitioned to IVIG once every month. Similar to yourself he was on predisone and Imuran. The prednisone is finished and is slowly being tapered of Imuran. His doctor has advised him to keep a close eye on how he is feeling. The positive is that if a relapse is to occur they know what works for him. As everyone is different it is important to advise your doctor as soon as something feels like a relapse. The quicker they start effective treatment the better it is.

      Keep your head up,