Reply To: Anyone with Sensory Predominant CIDP?
I get 2 bottles of infusion each of the two day treatment every 3 weeks. I’m there usually for 4 hours each day. I guess becasue i had never gotten IVIG before and my age, my doctor’s orders state not to excede 150ml drip. At the infusion center the nurses told me their normal full rate is 200ml. They infusion always starts slowly [50ml] then increases to max. This is to reduce the chance of side effects. The doctor’s orders also state to give benedryl and acetaminophen. Some patients get headache or rash/itching. THe only side effects I’ve expierenced is the increased fatigue and if i’m given the infusion at wrist or on hand i will bruise. Bruise doesn’t show until arround day 5 and last 2-3 days…no big deal. As I said, the only other side effect is the increased fatigue. I haven’t talked to my doctor about it. I’ll wait until my next visit since i read about CIDP fatigue and gather one has to learn to live with it and adjust accordingly. Fortunately my work understands and my job is such that I can schudule my workload to not do anything physically strenuous for several days after each treatment. The positive effects of the treatment do outweigh the negative. Research indicates that left untreated CIDP will continue to degrade a person’s quality of life. About 1/3 of untreated end up wheelchair bound.