CIDP Success

    • July 22, 2012 at 5:41 am

      Hello,

      I was diagnosed with CIDP in 2005. My case was not overly severe: I never really lost the ability to walk, for example. Still, it was severe enough that without treatment, I likely would have been paralyzed in my arms and legs. I was treated initially with prednisone, then plasmapheresis, IVIg for a while, CellCept, and Imuran. By 2008, my treatment regimen was stable and effective, with most symptoms at bay.

      In 2010, the Foundation published a study that suggested that a significant percentage of people with CIDP could experience remission and even cure (by analogy with cancer patients). Because my symptoms had been stable for over a year, I decided it was time to go without treatment and see what happened. My neurologist was supportive and guaranteed that treatment would be there if I relapsed.

      At that time, I was getting one plasmapheresis treatment every other week and taking Imuran. I knew three things: that I responded quickly to plasmapheresis, slowly to Imuran, and that it took about three month to develop bad symptoms. I therefore stopped plasmapheresis. After three months and no change in symptoms, I stopped taking Imuran. I had a central venous catheter for my plasmaphereis, which I left in just in case things went down hill after I stopped treatments. I remained asymptomatic for further eight months, so I had the catheter removed. In April 2012, I was treatment free for a full year, so by the definition of the study, I am in remission.

      It is still a mystery why I am in remission. Perhaps the multi-pronged, aggressive attack on the syndrome helped. Perhaps just the prednisone (I did massive doses for a while) did the trick. Perhaps Imuran suppressed my immune system just enough to allow it to start regulating itself properly. Or perhaps it was simply God’s grace to remove it from me (not that grace and medical treatments are mutually exclusive). In any case, neither my neurologist nor I claim any credit for my recovery. Nor can we responsibly suggest that the approach that I took will lead to remission in anybody else.

      Unfortunately, not everything is perfect. I am slower than I used to be, have more balance problems, tire more easily, and still suffer from occasional neuropathic pain. My last NCV was abnormal, just not enough to provide a diagnosis of CIDP. However, if in four years I am in this condition, I will happily call myself cured.

      ~MarkEns

    • August 22, 2012 at 3:08 am

      congratulations MarkEns,  It must feel so good  to be treatment free. That was  long time to have to deal with a catheter, I was more than ready to have mine out after only 10 days of haviing it.

      Best wishes on your remission–Lori

    • Anonymous
      August 27, 2012 at 6:43 pm

      MarkEns – such good news!  I know of one other person that is in remission (recently went off all meds/treatments) after 8 years of treatments.  Hopefully you both will continue to make recovery!!!!

    • Anonymous
      November 1, 2012 at 3:50 am

      As I am new to this, it is wonderful to read.  What is NVC?  Thank you for posting. Evelyn

       

    • GH
      November 1, 2012 at 6:09 am

      That should be NCV — Nerve Conduction Velocity. It is a test which can be indicative of demyelination.

    • May 1, 2015 at 11:37 pm

      Hello,

      An update is in order, but it can be much shorter than my first post. I am still in remission, after four full years without treatment. Residuals remain, at about the level described above, but otherwise things are fine. I have just one more year to go until we can call me cured.

      ~MarkEns

    • April 8, 2016 at 12:17 am

      Hello,

      A final update is in order. After five years of remission, my status is now happily that of cured. I would not have thought it possible when first diagnosed. Nor would I have made the attempt to find out without the work of the Foundation.

      If you find that your symptoms have been stable for a while, it is certainly worth discussing with your neurologist about tapering or stopping treatment. You may find that remission and cure is possible, but you will never know until you try.

      ~MarkEns

      • January 12, 2017 at 10:53 am

        MarkEns, did / do you follow a specific diet?

    • April 8, 2016 at 1:06 am

      Hooray, Yippee, Yahoo… Congratulations!!! We are all envious of you Mark! Thank you for giving all of us hope!

      Sincerely,

      Jim

    • May 6, 2017 at 9:52 pm

      To Nasdaq7,

      No, I did not follow any specific diet. My diet would not be one that any doctor would characterize as unusually healthy.

      ~Mark Ens