IVIG………all in one day…
AnonymousJune 21, 2007 at 12:20 pm
Hello to everyone and I apologize for posting on here so often, but I’m new and just have so many concerns and questions.
I have had two five day sessions of IVIG; last time I became nauseous towards the last couple days of treatment. Well, I am on Imuran now and I’m getting worse; the leg pain is unbelievable and my muscle strength is going down. I talked to my dr. today on the telephone and he is going to give me just one day of IVIG this time…I think something like 80mg per kg…..does that sound right?
I am really scared to get all of that IVIG in one day; can anyone please share their experiences?
Thank you so very much…..Sheila in WV.
AnonymousJune 21, 2007 at 2:53 pm
Today I just finished getting 60 gms in 4 hours at home. I premedicate with tylenol. IVIG is based on weight so my dose is 1gm/kg. I get this dose every 3 weeks and fortunately the only side effects I get are “soreness like aching” for about 3 days and I just want to sleep so thats what I do. Initially when I started my first dose was 2gm/kg over 5 days. Hope this helps.
AnonymousJune 21, 2007 at 11:29 pm
Once I got out of the hospital (3 months time), I was always given my IVIG in one day, but it was once a week. I don’t remeber the dosage but I only weighed 136# at that time, wish I still did (darn steroids.) Anyways, I am glad to see your doctor is on top of things & not making you wait. Sorry you are going downhill, hopefully the booster IVIG will bring you right back up.
Never apologize for your posts, many of us “old-timers” come here mainly to look for new posts to help other out who are newer to CIDP!
AnonymousJune 22, 2007 at 12:44 am
Here is the recommended dosage:
[/B] The therapeutic dose of IVIg is set at 2 g/kg. Although some practitioners divide the total dose for infusion into five daily doses of 400 mg/kg each, it may be preferable to divide the total dose into two daily doses of 1 g/kg each, provided that the patient does not have such underlying conditions as congestive heart failure or renal (kidney) insufficiency.”
Going by my weight I should only get 30 grams of IVIG per month, however because I was tailing off the end of each month they doubled my dosage. So now I get 60 grams, once per month and it is done in about 5-6 hours. I don’t have any new issues now that I get twice as much per month. Just make sure you are well hydrated prior, and I also take Benadryl and Tylenol.
I hope that helps.
AnonymousJune 22, 2007 at 2:57 am
Just wanted to add since it is all confusing to me also, a normal dosage my Neuro. gives a 225 pound man is 30 grams 1x monthly, however because I was having issues he doubled my dosage to 60 grams 1x monthly. He did this to help me make it the entire month between infusions on as even of a keel as possible.
I tried to find some documentation on the internet to make sense of the proper dosage but alas I am confused further lol. I seemed to find several different recommendations. Hopefully someone else can give a more definitive answer.
Sorry I added to the confusion.
AnonymousJune 22, 2007 at 3:06 am
This is from wikipedia (not the best source but make more sense):
“Dosage of IVIG is dependent on indication.
For primary immune dysfunction 100 to 400 mg/kg of body weight every 3 to 4 weeks is implemented.
For neurological and autoimmune diseases 2 grams per kilogram of body weight is implemented for three to six months over a five day course once a month. Then maintenance therapy of 100 to 400 mg/kg of body weight every 3 to 4 weeks follows.”
AnonymousJune 22, 2007 at 4:40 pm
Thank you to all who posted to help with my IVIG concerns.
Jerimy, thank you so much for your posts; you explained it concisely and I think I understand now. I do feel that the dr. is going to give me 80mg per kg of body weight. I am taking your info. with me to compare and will post when I get back home early next week. Thanks so much. Hope I can cope with the side effects; I’ll post about those also.
AnonymousJune 24, 2007 at 11:24 am
I think someone redid the math somewhere else. Here is my calculation:
I get the recommended 2 g per kg (or per 2.2 lbs) My weight is 97 kg or 215 lbs. That would be 2 grams times 97 kg = 194 grams. Over three days I receive a total of 195 g of Gammunex or 65 g per day. It takes about 5 hours each day and I am taking it well during that time. I premedicate with Benedryl and Tylenol. Afterwards I just get very mild flue-like symptoms for about 3 days.
Jerimy, I didn’t know you were a midget. 😀 60 g once a month at 2 g/kg would make your weight 30 kg or 66 lbs.
Sheila, 80mg/kg sounds very little compared to the 2 g (= 2000 mg) which is generally recommended, even compared to 1 g/kg (= 1000mg). If you in fact would only get 80mg, compared to you I get 25 times as much.
AnonymousJune 24, 2007 at 12:12 pm
Hi Sheila good luck.
Thanks Norb for the explanation. My DR order IVIG for me for the first time which I should get sometime in July for 5 days and I weight about 138 lbs. She mention Tylenol or Benedryl if I feel sick but maybe I should ask for it before my treatment. I will ask the people doing the infusion since I have to drive afterwards and it’s 90 min. to get home.
AnonymousJune 24, 2007 at 2:50 pm
I would DEFINETLY premedicate with Tylenol/Motrin & Benadryl. The Benadryl lasts for 4-6 hours so it should be out of your system to make the drive home after the infusion. I find, with Emily, that it takes about 30-45 minutes to work & she lays down for about 1-2 hours. You could take some earplugs, MP3 player, portable CD player, etc with you to help drown out the noise so you can rest during the infusion.
I still can’t believe that you had to drive 90 minutes for an infusion. It just doesn’t seem right to me.
AnonymousJune 24, 2007 at 8:02 pm
Hi Kelly thanks for the information. The reason for the 90 minute drive is that my Neurologist can’t order the infusion in Cornwall because she has no authority to order anything in Cornwall hospital as she has no privileged there. My family DR works in Crysler now so I am not sure if he could ordered that. Also since he only works 2 days a week in Crysler and I couldn’t just call him. But if I ever need it again I will ask my Family DR if he could order the IVIG for me in Cornwall since the hospital is about 5 minutes from my house.
For Ottawa I may look into getting a place to stay every night since it would be helpful and with the price of Gas I would save there and also save 3 hours of driving time. Somebody told me there is a place cheap for people visiting from out of town who have a love one in the hospital. Like almost a Ronald Mcdonald type of thing maybe. I was talking to my aunt tonight and she knows a woman who found a place to stay in Ottawa near the hospital because a family member is having surgery. My aunt will call her to get the info for me.
Thanks again for the information
AnonymousJune 25, 2007 at 12:53 am
naw Norb I am 6 foot 230 pounds currently. I get the Gammaguard Liquid which is 10% is that why the difference in dosages?? When I left the hospital 11/03 I weighed 117 pounds and received 30g 1x monthly. Now I weigh 230 pounds and get 60g 1x monthly.
I dunno. I did find this chart with the different brands that might be helpful for people:
[COLOR=Blue] blooddiagnostics.com/Comparison%20Charts/IVIG_Chart.pdf[/COLOR] [B](cut and paste into browser)[/B]
AnonymousJune 25, 2007 at 1:22 pm
I get IVIG once every three weeks. BEcause of my weight its 70g per kg. So im there for 6 or 7 hours straight. Its a long day and u get very tired but personally i dont know how u would react. I get tired and IVIG isnt doing that much work for me. But it might for u. Its no diferent to get this in one day. Good Luck. Write anytime.
AnonymousJune 28, 2007 at 1:57 pm
I’m back from my IVIG…. I recieved 40 grams over four to give hours. My side effects were a headache and some nausea….nothing bad at all. I still prefer IVIG over steroids and Imuran. I did post on that on another thread.
Thank you EVERYONE for your enlightened posts!
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