Reply To: New to CIDP and IVIg, side effects

June 24, 2012 at 12:58 pm

Some people take zofrsan for nausea (prescription, co pay on it can be expensive) in our case, the zofran caused headaches (0ne of its side affects) which made us sick? Everyone is different how they react. We do not get sick until after, typically 12-18 hours after and can be sick for up to 4 days (when we were gettingloading doses) As you develop a treatment schedule, you will not always be on a 4-5 day load. We (my 15y/o who was 9 when this started) now get a maintenance dose over one day every two weeks, it takes about 6 hours. Some people might take the amount over two days once amonth. We do it every two weeks because less school is missed, we start the infussion after school and then one missed day the following day with being sick from the infussion. Some people do not get sick at all so keep that in mind. As well, the bi-weekly schedule is better for us because frequency is better for us than quantity, getting a smaller dose closer together as opposed to one bigger dose every month. As you become more aware of your body and symptoms, you will be able to communicate to your doctor how the ivig, symtoms of cidp react/respond.
Just some fyi , in case you don’t already know. You can have the treatments at home through a infussion company, we use Coram. For the first infussion we did do it in the hospital. You don’t mention if your doc has experience in cidp, so just in case…he should order blood work to see if you are able to get ivig (check ig compatibility) There is a standard formula for weight in relation to amount and speed of infussion. To avoid reactions, make sure to ask if they are following the prescribed protocol for infussion rate. Some even need it slowwer, other can speed it up with no ill side affects. After the first load you and your doc can tweak things. We used to premedicate with tylenol,zofran and benydrly during the entire infussion every 4-6 hours and 2 days post (zofran once a day) but we stopped as it did not help. Somewho get real sick have either started with a dose of slumedrol or finished with it ( a steroid that helps with the reactions) we never did this because I did not want him to have steroids.

Once you get into a maintenance dose schedule, it will be less intrussive to your life. If you wanted, you could even wear a fanny pack pump and move about while you are getting treatments. Being that you work from home, it should be pretty easy to keep up with things. Depending on what brand you will use (make sure doc usues same brand all the time, you may have to switch based on side affevcts and how it works for you or if you have diabetes, you will need a certain brand without sugar stabilizers. Once you are sure of the brand you can sign up for their loyalty programs. We use gammaguard, others use gammunex. Keep us posted