My husband was diagnosed in early feb. IVIG worked great but in three weeks relapsed. IVIG was given again but with no results. Plasma exchange was done and worked well. But relapsed again and had another exchange plus taking steroids now and a form of chemo once a week. Was getting stronger but yesterday had a stomach virus. He seems weaker today. Is that normal. Is it because of the virus? Is this just a setback or relapse.
I've discovered that remission is not always immediate and there are relapses. We, the CIDP afflicted, seem to be a dart board of prescriptions haphazardly aimed and thrown at the elusive and mutant genes of the IgG bull's eye. The three week interval between IvIG, and the accompanying failure, may mean nothing. I could ask for a larger dosage at a shorter interval. ALso, ask for kidney and liver blood tests to determine possible damage to those organs.
I am at 120 grams, over three days, every two weeks; along with 40 mg daily of Imuran. I'm making a slow, but stronger recovery than my once-a-month dosage at 100 grams.
I was diagnosed at the end of Aug, 2013. I started IVIG in October. it took awhile for it to kick in because I was only receiving the treatments one day a week. Then I noticed that I was having "good" days. Then in January, I noticed I wasn't having any "good" days, then I started sleeping 24/7. So I went to my neurologist and he stopped the treatments. He does not do steroids of plasma exchange. After stopping treatment, I guess I had a relapse. Had to get the walker out again. I weaned off Gabapentin (was on 3600mg/day). Started on Lyrica and amitriptyline for the severe pain I have. I don't know what will happen next.
Thanks for the info
estaban said:
I’ve discovered that remission is not always immediate and there are relapses. We, the CIDP afflicted, seem to be a dart board of prescriptions haphazardly aimed and thrown at the elusive and mutant genes of the IgG bull’s eye. The three week interval between IvIG, and the accompanying failure, may mean nothing. I could ask for a larger dosage at a shorter interval. ALso, ask for kidney and liver blood tests to determine possible damage to those organs.
I am at 120 grams, over three days, every two weeks; along with 40 mg daily of Imuran. I’m making a slow, but stronger recovery than my once-a-month dosage at 100 grams.
Thanks for replying
Jordan said:
I was diagnosed at the end of Aug, 2013. I started IVIG in October. it took awhile for it to kick in because I was only receiving the treatments one day a week. Then I noticed that I was having “good” days. Then in January, I noticed I wasn’t having any “good” days, then I started sleeping 24/7. So I went to my neurologist and he stopped the treatments. He does not do steroids of plasma exchange. After stopping treatment, I guess I had a relapse. Had to get the walker out again. I weaned off Gabapentin (was on 3600mg/day). Started on Lyrica and amitriptyline for the severe pain I have. I don’t know what will happen next.