CIDP Success

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