Treatment adjustments

February 17, 2009 at 4:28 pm

I was diagnosed with CIDP March 2008. I had my first loading dose in April. I made some improvement. I had fallen several times and could not get up, my husband had to help me dress if it went over my head since I could not lift my arms past shoulder heighth. I could walk but needed help to rise from a chair. Again, I improved some but not to the degree I had hoped. I was then given maintenance dose for the next two months (23 days apart). I made no improvement on the maintenance dose. I did not, however, lose any of the progress I had made from the initial loading dose. I was then put back on a loading dose. After two more months of IVIG and time off from work to sleep and rest (I took 2-4 hr. naps each day). I started improving. I improved until I went back to work and gave up the naps. The neurolgist was amazed at how much strength I had regained. I am now very functional. My quads are still not working so I can not get up from the floor without help. The dr. was so pleased that he talked about extending my treatments to every 30 days but to continue to receive the loading dose. However, I seemed to go downhill 2-3 days prior to the 23rd day. So, we adjusted to every 21 days. I have infusions next week and at that time I am scheduled for another EMG. I have not had one since last July. I am looking forward to seeing how much I have improved measured by those tests. I have not felt like there has been any improvement for several months. However, I went to my granddaughter’s soccer game last Saturday and felt much more confident walking across the uneven field than I had felt when I went to her games last fall. I think once you get to a certain point the improvement is much harder to detect. I made such great strides earlier. I do want to mention there is a lovely lady in her 90s where I receive my infusions. She lives on her own but gave up her car last summer. She has been receiving IVIG for several years. I have not seen her walk. She usually starts her infusion prior to my schedule and I finish prior to her. I hope this helps.