Question about CIDP Treatments

    • February 7, 2011 at 11:25 am

      It is my understanding that CYTOXAN cannot reverse severe anonal damage.

      STEM CELL THERAPY on the other hands IS able to bring back severe axonal and restore the nerves completely.

      Can anyone out there shed some light on the truth of this matter?

    • Anonymous
      February 8, 2011 at 12:46 pm

      You are correct about the cytoxan regimen, as I went through this procedure of high ose monthly infusions for 9 months. Although it arrested my CIDP & I was able to get a lot of function back, it could not reverse the axonal damage I had sustained in my feet, lower legs, hands, etc.

      As to the SCT, it is basically the same regime in that it uses high doses of cytoxan to arrest the CIDP, only in a controlled environment. I don’t believe, however, that even SCT can bring back the use of nerves that have axonal damage. Someone please correct me if I am wrong about this.

    • Anonymous
      February 8, 2011 at 3:02 pm

      As for the first, I’ll go way out on the limb, and state emphatically ‘In no case does any form of Chemo reverse nerve damage.’

      The theory, as I understand it, is for the Chemo to knock the bejabberrs out of of the immune system therefore allowing the “normal” nerve regeneration functions to more properly take place in the absence of the misguided immune factors that caused the original problem.

      As for the second, let me share what ‘they’ told me at Chicago during my evaluation for STC . It goes something like this, “[I] will likely never recover the muscles already lost to severe atrophy. But, you can expect to slow or stop deterioration in those muscle groups not yet severely affected.[/I]” Recall subject to my own brain fog….

    • Anonymous
      February 10, 2011 at 11:58 pm

      Yes, the cytoxan prevents the bad antibodies from further attacks on the nerves (if it works for one.) Like SCT when the nerves are no longer being attacked, then the myelin sheath has a chance to rejuvenate, or in some cases actually resprout, which allows the nerves to again send signals to the muscles. CIDP attacks the nerves, not the muscles. The muscles atrophy because they are no longer getting the signal as to what to do, thus they don’t work either. My hands were very atrophied from not being used for 2 1/2 years; but now they look normal again (at least to me they do,) so I believe that we can get some of the muscles working again & reverse at least some of the atrophy.

    • Anonymous
      February 11, 2011 at 5:00 pm

      No treatment will reverse axonal damage. However, the nerves may regenerate on their own, once the disease is effectively treated. It can take a long time– up to 2 years. I had a stem cell transplant 5 months ago. My arms, which were not heavily affected and suffered “only” demyelination, are back to normal. My legs, however, have sustained axonal damage and I don’t see a lot of change pre and post transplant. However, there are indeed folks who have had the SCT whose nerves have regenerated. I am heartened by their results and hope for the same.


    • Anonymous
      February 11, 2011 at 9:48 pm

      [FONT=”Microsoft Sans Serif”]i would essentially agree with everyone here. in my case, i did have pretty severe axonal damage in my feet, ankles, etc. for the first time today, i was able to sprint. i had been able to jog along, but now i can really run. that is new. so my belief is that either the axonal damage was not as severe as they thought or my nerves regenerated by, like pam says, sprouting– or both.

      hang in there sharon– i found that the biggest healing kind of takes place after the 1st six months– maybe because your body is in better shape from the SCT itself– in these last few months, i have made my biggest strides. hopefully you will too.[/FONT]

    • February 11, 2011 at 11:36 pm

      Hi Anastasia,
      It seems that stem cell therapy makes it possible for nerves with axonal damage to come back either by sprouting or regeneration. Not only Alice, but others have had the nerves return as you’ve pointed out. Hope trumps positive thinking, because the Stem Cell results have shown the dramatic changes that can and do occur. Nerves grow back slowly. Time is on your side.