Unfortunately, there are 5% of people with CIDP that the normal protocol of treatments do not work.
I, too, fall in that 5%. I am also getting Cytoxan monthly at 2000mg.
The Cytoxan slowed down the progression, as it did not stop it. In the summer of 2006, two of the doctors on my team of seven, said I had about two years left to live. That was the summer I started on Cytoxan. At that point, it had been rapidly progressing. A month or so ago, my Neuro. thinks the Cytoxan has added about two more years.
I also went through 9 months to over a year of each of the normal protocol of treatments-high dose steroids, IVIG, plasmaphereses, immuno-suppresents.
There is nothing left to try. The only thing that might hold out hope is the stem cell experiments, though, my Neuro is not pleased so far with the outcomes of experiments. He is head of Neurology at my local hospital, and told me he is watching the outcomes. He said if he was pleased with the outcome, he would entertain starting it at his hospital–but to date, he doesn’t see the benefit so far.
The CIDP hit my autonomic system, knocking off the nerves that control the various organs and systems. Because it hit the phrenic nerve, which controls the diaphragm, I have very shallow breathing now and am on oxygen 24/7.
The doctors have told me, that that is what will probably do me in–I will get a bad flu or pneumonia, and not be able to fight it off.
I choke now on food–a feeding tube is not too far off in my future.
I also know a trach and respirator is not too far off in my future as well.
Get you affairs in order, as I was told by my doctors. Have your Advance Directive in place. A sister disease of CIDP is ALS, as well as MS.
Go over to the ALS chat room–you can talk with one of the moderators over there, his name is Joel. He is living an okay life with a trach and respirator. Of course it is a much better life without one, but I am saying that you don’t have to give up–you can live an okay life for a while longer, with a trach/respirator and feeding tube. The people over at the ALS chat room can answer your questions for you. Since there are so few of us here that can tell you what to expect, you can talk to people over there, since advanced CIDP is similar to what they go through.
Has it hit your autonomic system yet? You end up taking a handful of pills three times daily–as it hits each organ or system…
Email me if you want any more info.