ivig question

    • Anonymous
      March 25, 2008 at 6:21 pm

      I start my ivig treatment next week and i’m trying to get an ideal of what to expect.The neuro has set me up for 0.4gm / kg, 5 days each month, for 6 months. Does this seem to be a typical protocol? How long should each infusion take to administer? ( I weight about 195lbs )
      Thanks for any insight.

    • March 25, 2008 at 8:14 pm

      Depending on how weak you are, or how well you respond, that is an awesome plan. There can be little tweaks here and there. For instance, my 114lb 11 year old gets 100g, or 2g/kg (which translates to your .o4 per day) over four days now, 25g a day. The first time was over 5 days. You also may be able to do it in three, it just depends on how well you tolerate it. The first time will probably be in a hospital setting, but eventually you can have it done at home, as many do. You are very licky that your doc agreed to 6 months of loading dose, most docs do one loading dose and then the next month cut the dose in half. Our doc wants us to stay on the loading doses for a year, and then we will spread them out to every six weeks maybe another year and so on and so on. It all depends on your symptoms when you start spreading out. I do not know what your condition is, but Kevin is not that bad compared to some, we are blessed, but the doc still wants to do the once a month, because it is important to never have symptoms, otherwise another demylienating process has started.

      Make sure they pre med you and start the flo rate slowly.

      Good Luck,
      Dawn Kevies mom

    • Anonymous
      March 25, 2008 at 10:39 pm

      I had two 5 day loading treatments in the hospital, then went to 25gm three days every 4 weeks for the next 5 years. About 6 months ago I went to 2 days every 3 weeks. Suits my body better, and I lost one bottle in a 3 month period. This seems to be holding me very well. I go to the Hosp. for my treatments. It is not far away, and I don’t mind at all.
      Best wishes for successful treatments.
      Mary Ann

    • Anonymous
      March 26, 2008 at 1:26 am

      Typical protocol usually is 1-2g per kilogram of patient weight. I don’t know how severe your symptoms are so it may be just a starting point. When I had problems with certain brands I was scaled back from 2g/kg to 1g/kg. Now, with a new doc I’m getting 2g. At your weight that’s 78g. They will round it to 75 or 80. Lets say 80g – 15g for 4 days and 20g 1 day. The rate that you get your infusion will determine the length of time it takes. You’re going to want to make sure that you start very slowly. I get 50g per day and it takes 5 hours. That isn’t the fastest time I could do but more people have problems at faster speeds.

      You want to make sure you premedicate with benadryl and tylenol to prevent any allergic reactions or headaches. You also want to drink plenty of water the days of your infusion. Can’t stress the water and benadryl enough.

      Im doing Imuran and IVIG for 5 months and I’ve started PT and OT to see if I can regain anything. Im getting my infusions at home. You may get yours in the doctors office, an infusion center, a hospital or at home- depends on your doctor and your insurance.

      Be sure to write down the name and manufacturer of the IVIG product you are getting and write down the Lot Number and Expiration Date printed on the box the IVIG comes in. Many manufacturers routinely have recalls for various reasons so you’re going to want to document everything. Keep a log. Its a good idea to keep a general medical log to document how you take and react to medications, how you feel etc.

    • Anonymous
      March 28, 2008 at 11:37 pm

      Thanks for the replys.
      I found out today that my insurance approved my treatment. The infusion center said that they ordered the ig, and should have it early next week. However, the Pharmacist was questioning the infusion rate (dr had rx it at a rate that would take about 2 hours) they feel that will be too fast, should be more like 4-5 hours, so they were gong to check with the dr to see if there is a reason for the fast rate. Sounds like s-l-o-w is better.
      Thanks again,

    • March 29, 2008 at 11:28 am

      Slow is the only way, especially the first time.* Kevin gets 25g over 4 days for 6 hours and 40 minutes each day, with a max flo rate of 39.* You probably don’t need to go that slow.* Most adults seem to go between 50-100.* If you start feeling a headache, anxious, weird, you will know, just tell the nurse she needs to go slower.* Be sure to take the pre meds and drink.* I am sure your doc has already arranged for that but it is always good to know in case there is a confusion. Good luck!

IVIG question

    • Anonymous
      December 18, 2007 at 9:31 pm

      I had a neurologist appointment yesterday and he mentioned giving me IVIG to make my recovery move along quicker. Everyone feels my recovery has moved along very well including my doctors. I am a little confused as to why he would suggest IVIG. Is there a benefit to me receiving it at this point? (I was diagnosed on 10/26/07 and am able to walk around without using any devices, unless I am tired, and feel I am about 85-90% recovered)


    • Anonymous
      December 18, 2007 at 9:40 pm

      It is hard to say. You will have to decide whether you can afford the IVIG. Also if you have GBS then maybe it is to late but if you have CIDP then maybe you need the boost that the IVIG will give you.
      I got CIDP in 2004. I got my first 5 days of IVIG this past summer and will be getting another 3 days worth soon. I never missed worked because of my CIDP but I am on modified work and some days it’s tougher then others. The IVIG I had this summer did improve me but she wants to see if I can improve more since I am still having problems.
      Hopefully other members will answer your question.

      Good Luck


    • Anonymous
      December 19, 2007 at 7:56 am


      (aaaah, just lost everything I wrote in reply, here is the shortened version)

      I’m not sure why he would suggest the IVIG at this point. Your body seems to be well on its way to recovery, and you have done so well so far. Docs are often so hesitant to give IVIG, I wonder why he would suggest it when there doesnt seem to be a need for it now?

    • Anonymous
      December 19, 2007 at 11:08 am


      ditto ali.

      gene, away from home

    • December 19, 2007 at 11:14 am

      Unless he suspects you have cidp, I cannot imagine why he would give you ivig now. Rest would be your best weapon at this point with gbs residuals.

      The trick is to monitor your condition or should I say residuals. If you follow your body and rest, your symptoms and recovery should be pretty stable. If however, you are resting and things start to progress backwards, it may be time to reasses and explore if in fact you do need the ivig because it is cidp.

      IVIG would not help gbs at this point. Technically it does not move the recovery quicker even when given at the time of dx. It just allows the bad autoantibodies to stop producing, therefore stopping additional damage. Based on your comments regarding your 80% recovery, you are no longer producing the autoantibodies and your body is recovering.

      Best of luck to you and a Merry Christmas and healthy New Year!
      Dawn Kevies mom