Loading dose repeated

February 17, 2009 at 9:17 pm

My first IVIG was considered a loading dose over several days. The next two months the dosage, which was a maintenance dose, was half of the loading dose. After the first IVIG dosage which consisted of several days throughout a week, I improved. For the first few days afterwards I just felt, not really bad just kinda listless. About the third day I had more energy. Then I slowly had more strength, not a lot of strength, just more than I had. I still had to have help dressing, but I could roll over when sitting on the sofa and push myself up. This was disappointing because I thought with the one dosage of IVIG I would be back to normal. But, I was somewhat stronger in both my arms and legs. My next IVIG was half the orginal dosage. It too was over several days, but it took about half as long each of the days. That was May and June 2007. I did not improve on the reduced dosage, but I did not lose the strength I originally gained after my first IVIG. Again with each of the two maintenance infusions (May and June), for about three days I felt listless. Then my energy would improve but no increase in strength. In July, I went back to the increased load dosage. With the increased dosage along with taking long naps everyday I started gaining strength. After each IVIG during this period of time, it seemed to take 7-10 days before my energy level started improving. We moved the interval from 23 days to 21 days, when I noticed my energy level decreased and my legs had the wierd feelings running up and down of what I call “wired”. It is like the feeling you get when you hit your “crazy” bone in your elbow. That is as close as I can describe it. We did not change the interval until the December to January interval. I had notice in previous months that my energy had fallen off and my legs felt “wired” about three days before it was time for my infusion. But since I had gained strength (late October, November time frame) I had done something each month that the neurolgist thought had caused the problem. One time I walked down four flight of stairs. (You can see I have improved)!! He told me to make sure I kept consistent activity throughout the month to see if we need to move up the interval. So, I made sure during December I did not do anything out of the ordinary to cause the problem. And, I still had problems (lack of energy and “wired” legs) three days prior to the infusion. So for the interval between January and February we moved it up to 21 days and that worked. I had my last infusions on February 2 and 3. I will have my next infusions next week, February 23 and 24.

Again, I have really improved. But, I am far from normal. I told you I walked down four flights of stairs. I can only walk up one flight and it is not a pretty sight. I feel like my legs look very wobbly (they certainly feel that way). But, I feel very functional and if I am not put in a situation where I have to bend too far down that requires quad muscles or walk up more than a few steps, I do not think anyone could tell anything is wrong. I can dress myself, dry my hair (hold the hair dryer over my head –yeah!!), put a dish on the second shelf in the cabinet. I can walk all the way through the grocery store — not just one aisle like before. I could not do any of those things before. Prior to CIDP, I had always been very strong. So, this has been quite a trip!!

I hope you can make sense of my time frames above. I just thought of one more thing. Part of my diagnosis of CIDP was my responding to IVIG. Maybe your mother’s doctors want to see her response.
Again, I hope this helps.