New to CIDP and IVIg, side effects

    • Anonymous
      June 22, 2012 at 3:14 am

      I have cidp and I am starting IVIg in a few weeks, but I am going into the unknown world and would love to know what I can expect to feel after the treatment. I am self employees and have appt. through out the day. If I have a four hour IVIg treatment what will i feel like when it’s over, will I be able to work directly after. We are set to have 5 in a row for the first week!

    • Anonymous
      June 22, 2012 at 6:39 pm

      Hi Caveman. Sounds like you are getting a loading dose over a week period. I suspect you won’t want to work that week based on my husband’s experience with his loading dose. He didn’t have much advice prior to his loading dose. Drinking lots of water a few days prior to treatment and during treatment is critical as IVIG is a very viscous substance. Without the water you may wind up with killer headaches–hubby did. Also he started taking a couple of Naprosyn and a dose of Benydryl pre IVIG and that really helped as well. He has been getting IVIG monthly since 2007 and still is wiped out for a couple of days after his treatments i.e. tired and not feeling like doing lots. Then he feels good. Best of luck with your treatments.

    • Anonymous
      June 22, 2012 at 7:02 pm

      Laurel, thanks for your help. It sounds like I will need to clear my datebook for that week. Yippee! Thanks for the water advise.

    • Anonymous
      June 23, 2012 at 12:52 am

      You are welcome Caveman. Don’t forget the water or you will have incapacitating headaches–very miserable. If you have other questions, fire away. We learned so much here versus from the neurologist. Also, if you start to get a headache while getting the IVIG, tell the nurses and have them slow the flow rate down. My husband can have his run through at a fairly fast rate now, but many people have to run it very slowly or the headaches occur. Don’t hesitate to tell them to slow it down. In the beginning slow is so much better and safer.


    • Anonymous
      June 23, 2012 at 1:29 pm

      Hey Laurel, what about beer drinking during this 5 days? Also, will the infusions increase my appetite.

    • Anonymous
      June 23, 2012 at 3:37 pm

      I think you should give up beer during the treatments as alcohol is dehydrating and you want to be well hydrated–sorry to disappoint you. I don’t see any evidence that the IVIG increases appetite–hubby sometimes looks a little puffy so water retention happens for a few days. He has the post IVIG tiredness and lethargy so no big appetite.

    • Anonymous
      June 23, 2012 at 8:25 pm

      I take something for nausea before my infusions and the standard benadryl/two Tylenol. My nurse hydrates me with a bag of IV Saline during my infusion that has really helped. Try to rest after your infusions. Don’t get over heated or do too much. You may or may not have side effects but be prepared and ask your neurologist for migraine or nausea meds if OTC ones doesn’t work for you.

    • 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

    • June 24, 2012 at 1:03 pm

      sorry, I reread my post lots of type o’s, won’t let me edit. SOLUMEDROL, ZOFRAN,

    • Anonymous
      June 24, 2012 at 3:58 pm

      Dawn I have a question. My husband to my knowledge has never been tested for IG compatibility. What is the test called?

    • June 25, 2012 at 1:26 am

      He probably was, I don’t know the exact name, but it is just to find out if you are allergic to it. It should be done prior to ivig being administered. Once we were in the hospital awaiting the spinal, blood work was done immediately, you know typical panels, aids, heavy metals etc. AND to see if we were allergic to ivig should the lp come back elevated. The doc wanted to be ready to go since we were deteriorating so quickly. We had to wait anyway, there was a shortage at that time and it took days to get it! Anyway…. Since you guys have gotten it many times, I would say you had the test or if not, luckily he was not allergic to it.

    • June 25, 2012 at 2:35 am

      hi caveman–welcome to the forum. I have had several loading doses over the past three years. I got them in 2 days instead of the standard 5 because I am also self employed and didnt want to miss work. I am not sure of your age and health condition, but if you are not over 60 and in good health you can discuss the 2 day with your Dr—you will get the same amount (probably 2gm per kg if you are doing standard loading dose) it’s just spread over 2 instead of 5 days.
      i did not have side effects from the ivig, drank lots of water, pre-medicated with tylenol and benedryl. My infusion took about 4-5 hours. I was able to make the 3 hour drive home after with no problem. I found that drinking caffeine after helped too.

    • Anonymous
      June 25, 2012 at 7:49 pm

      Hey Lori222, thanks for your help. It all seems like a big crap shoot. Some do well, some get head aches, some feel no effect, it depends on the brand you use, it depends on what your doc knows, if you are close to New York they have a new trick. Man, I’m very confused! I guess I’ll take my infusions and see what happens. I will take the week off work and drink a lot of water prior. By the way, I am 65 years old.

    • June 26, 2012 at 12:22 am

      caveman—I am not positive if the exact cut off age for the 2 verses 5 day schedule is always 60. I am sure it depends a lot on your Dr and your health—just something you can ask about if you are interested. I used Gamunex, my Dr specified on my order ” no generic equivalants”. im not sure if this isn’t specified, if they use generic versions or not?? something else you may want to ask your Dr. Hope you are one of the ones who do fine with it 🙂