Reply To: questions from recently diagnosed CIDP

There is a great deal of variation from one case of CIDP to another. The rate of progression can be very slow or relatively rapid (a few weeks). Response to treatments also varies. It often takes some experimentation to find the treatment protocol that works best for you.

IvIg is a standard treatment for CIDP, so should be considered a medical necessity if your neurologist wants to do it. Unfortunately, some insurance companies try to weasel out of their obligations at every opportunity. I was fortunate to have very little difficulty with insurance coverage. I had two five-day rounds of IvIg which were covered, even though they were not of much help. If you need IvIg, but have trouble with side effects, you can try reducing the infusion rate, or changing brands if possible. Also, there are medications you can take when having IvIg which make it more tolerable.

Prednisone is generally used as a short term treatment, starting at a full dose, then tapering down to zero over the course of a year. I followed this regimen with no adverse side effects. While taking prednisone, I started taking mycophenolate mofetil, an immune system suppressant. This takes awhile to have an effect, but by the time the prednisone is dropped, it is sufficient by itself.

You definitely should try to remain optimistic. My case looked pretty bleak. I continued to deteriorate after IvIg. I spent about two weeks in the ICU and was a quadraplegic for a few weeks. I was a paraplegic for a few months. I knew recovery was beginning when I could lift one finger independently of the others.

It was a long road back, but today I walk without any assistive devices, I do not require pain meds or IvIg infusions, and the only medications I take are mycophenolate mofetil and two optional nonprescription supplements. I am not fully recovered — I can’t run, I’m still a little unsteady on my feet, and my feet hurt most of the time. I’ll take it. I hope your recovery is as good as mine or better.

It is important to watch for signs of relapse. It is important to distinguish from general exhaustion and relapse. Exhaustion is typical of CIDP, and will come from overexerting yourself. You must have physical exercize, but must pace yourself to avoid exhaustion and to rest as needed. Relapse is not merely tiredness, but progressive weakness specific to affected nerves and muscles. You need objective ways of monitoring this. Your neurologist does this when he tests your strength in various ways. You can do this at home very easily with small weights and elastic therapy bands. If you have a persistent loss of strength, evidenced by inability to lift a given weight in a particular way, then it could be a sign of relapse, which calls for an examination by your neurologist.

I know that I am in remission because my ability to lift weights has not declined, my balance has improved, and my pain has lessened, even though the improvement has been very slow. But I take nothing for granted. At the start of every day, I try out my legs and think about whether they seem as good as the day before. I do a few exercizes now and then, and test my balance. Then I just go on with my usual activities. I am very fortunate in that there has been no backsliding so far.

It seems that you are still trying to arrive at the best treatment plan for you, which will lead to the best recovery. I wish you the best and urge you not to give up hope.