Reply To: 3rd IVIG not as effective?/relapse?
Hi there! I have been thinking about you often during the forum blackout period! I had such a similar experience- The challenge with cidp is it is literally like trying to shoot a moving target- only when the inflammation/ demylenation is blocked can your nerves start to heal and many things affect the balance of healing/ damage. I myself am recovering from a cold and my usual 10 day interval of ivig does not seem to be relieving my symptoms as much as usual. I was told by Dr Dyck at the Mayo that getting things under control and relapse free is essential before backing off of dose of ivig- I was on weekly ivig for about one year and then added an immunosupressant ( Azothioprene or Imuran in my case) to try to allow for extending interval between IVIG. So far it has worked but I definitely have times when I am stronger and less paresthesias/ fasciculations. I would advise you see if you can get a more frequent IVIG if you can swing it as you are still not stabilized. My neurologist has always taken the approach of getting me to normal or as near normal function as possible – your current symptom burden is really not an acceptable outcome esp when you are not on optimal treatment yet. Good luck and hope you are feeling better soon!!