Does IVIG lead to nerve regrowth? Is it painful?

    • Anonymous
      May 27, 2013 at 5:18 pm

      So, I had my loading doses (5 days) of IVIG about seven weeks ago. I was scheduled for monthly infusions to follow but started falling and limping sooner than that and the MD shortened it to 3 weeks. That makes a loading dose, followed by two sets of 35 G doses three weeks apart. When I get the IVIG, the numbness and limping are gone the next day and about three days later when the headache is gone I get this great feeling of energy.
      When I first fell ill, I had the worst muscle spasms you can imagine. Feet, calves, thighs, pelvic floor: you name it, it would lock up, sometimes for hours in my back, feet, and pelvic floor. As the nerves died off, the spasms diminished to twitching. Still painful but more annoying than anything.
      My question is, last week I started having the major, huge, problematic muscle spasms again. Is that the nerves healing to the point where an old problem recurs? Does anyone have experience with IVIG “running the tape backward” like this? If so, does it keep running back past the point of injury?
      When the numbness goes away, the pain is pretty huge and surprising. Is there any chance it is pain from the nerves regrowing and will stop?

    • GH
      May 27, 2013 at 5:34 pm

      IvIg does nothing directly to promote healing. The purpose of IvIg and other treatments is to halt, or at least slow, the attack on the nerves. If this can be done, then nerve healing will take place just as most other tissue damage can heal. Nerve healing is extremely slow, however, particularly axonal damage. Healing may not be 100%.

      Pain can be associated with nerve healing, but when nerves are damaged, there is no one pattern. What you experience depends on which nerves are damaged and how they are damaged. During a healing phase, pain can increase as sensory nerves become more functional, and can decrease as nerves heal, but main may never go away, even if there is no permanent remission from the active disease. I have had no remission two and a half years out from my case of CIDP, and my feet still hurt all the time. They may never stop hurting.

    • Anonymous
      May 27, 2013 at 6:13 pm

      Hmmm, that makes sense. I will want to ask my neurologist more about the EMG results. I know there is significant sensory and motor nerve damage, with an associated myopathy, but I do not know if it shows axonal damage. I won’t tough out the interval either, but will call and get my doses closer together the day I start stumbling to give the IVIG a better chance to work without the damage recurring. Thanks!

    • GH
      May 27, 2013 at 7:38 pm

      There are typos in my previous post. It should read: “… but may never go away, even if there is permanent remission …”. Sorry.