Reply To: need spome advice on this cidp rollercoaster ride??
exposurf: I was on 25g IVIG – infusing 12;5 g 2x/week. The idea was to catch me before I relapsed.Originally, I started with a loading dose with 1x/month, switched to weekly, to 2x/weekly. I had to switch brands along the way. At 2x/week I felt like I was trapped to the iv pole and the horrible side effects, etc. After many months I cried uncle – or my body did. I developed a rash and other reactions (chest pressure, allergic reactions) and we discontinued it. Dr is looking into sub Q, apparently a great delivery mechanism for IVIG without the side effects; of course, insurance co. is giving us challenges.
Needless to say, the nerve pain has spiked and I am pretty miserable. I have only had one set of infusions (25 g) since Thanksgiving and I can’t say what’s worse: loosing my life to the iv pole – or tryng to keep a happy face while handling the horrible nerve pain and neuropathy. I feel like I have poison ivy inside my veins, only instead of blood it is little glass pieces inside my body. It is horrible feeling – as I type I am squeezing my feet over and over; they itch! they hurt! they burn! I can’t walk without the same pair of heavy duty sneakers (with heavy cotton socks) that I have worn for 3 years because my body can’t handle the stimulation. I also get muscle pain and weakness. I get fasicullations as well, but since I d/c the IVIG, they have quieted down (or perhaps it is that I can’t feel them).
*Perhaps you might try a few months every 10 days and see what happens. Tell your doctor about reading many patients’ treatment history and see what he does. My dr. – from the Weill Cornell Medical Center – is very open minded and interested in the news we pass around on this forum. I found that the better the CIDP Dr, the more open minded they are to all areas of input, including this forum!
Throw your shoulders back (ha!), chin up and make sure you take time to remind yourself that you can do this!