70gr IVIG in one day?

Hi Dawn,

My doctor just suggested that I could do 70 gms one day every other week instead of 35 gms per wk… I asked how that woud work out side effect wise and he said I’d most likely have more severe side effects, but I’d get a week off. I decided to stay as I am.

I notice you live in MA… why do you have to travel 2 hrs? I live in NH and get home infusions right now. I had to fight for it, but it’s so much more healthful, as there is no exhaustion from travel, extra people, germs etc, and my recovery time is quicker and easier.

I hope you can get this worked out to your advantage. Let me know if I can help.

Erin

Dawn:
I receive 60mg of Gamunex every two weeks. The infusions are done in my home by Home Nursing Agency. We increase my infusion rate by increments, starting at 5g per hour, and working up to as much as 40g per hour by the last half hour or so. I have very little in terms of side effects, mainly just a slight headache, if anything. For me, the infusion rate is the most important variable when it comes to side effects. If I feel even the slightest headache coming on, we decrease the infusion rate until I am comfortable. I also pre and post-medicate with tylenol. I fought to get the nursing agency to provide me with the same nurse consistently for my home infusion therapy. I wanted someone who is a good stick, familiar with the specialty pharmacy providing my medication and supplies, familiar with my infusion pump and equipment, familiar with my medical condition and issues, and who I am comfortable with having in my home handling this important therapy. Before, I got whoever was scheduled that day, most of whom were lousy at sticking me, and totally unfamiliar with the equipment and medication. To answer your original question, the appropriate amount of IVIG to receive at any one time depends on your condition, your tolerance of the product, and your doctor’s recommendations. By all means discuss the issue with your physician, but also let common sense and your body guide you.

Dawn,

I get 90 grams every month. I can’t drive myself and must rely on others as I take Tylonel and benadryl to avoid the nasty side effects.

It is a long day, leave the house at 7:30a.m drive an hour to hospital and then I usually get home about 7 p.m.

then it is off to bed!

Rhonda from Canada

[QUOTE=dawnpavone]Thank you all so much for the info. I feel that I will at least try it to see if I can tolerate it without side effects.

Yes, I wish that I had found the home infusions worked for me. My insurance company only contracts with two pharmacies, and one he fired for crossing the hippa policy!

As far as docs recommendations? I finally found a neuro that I love and trust, but there is always the “hearing it from the horses mouths” when dealing with this disease. If I had listened to the last two dr., I wouldn’t be walking! lol….
[/QUOTE]

Dawn, I agree, I would try it out and see how you do. There shouldn’t be a problem with getting it all in one day at that dose. I get infused one day every 2 weeks instead of 2 days in a row every 4 weeks and I love it. By having just one day of infusion I don’t get the same side effects I did that were hitting on day 2 and having more infused, so you might find some relief in that alone. Also, the travel you incur is a long ride and would be easier on you if you weren’t doing it 2 days in a row.

I am on pretty high dose IVIG, I only weigh about 100-105 lbs and get 70gms every 2 weeks.
It would be worth a try, you can always change your schedule back to how it was if it doesn’t work out for you!

Good luck 🙂

From what I have experienced and read, the rate of infusion is probably the major factor for tolerance not as much the dose in a day. Since we have nerves that may have IV IgG bound to them (as opposed to people that get IV IgG because they do not make enough themselves), people with GBS/CIDP may be more sensitive to receiving it. I only got IV IgG a few times, but found that I could not tolerate a rate of infusion of more than 125 to 150 ml/hr or I felt like an donkey was sitting on my chest. This means that it took a long time for the infusion (60 g of 6% is 1000 ml given over about 8-10 hours with the ramp up). People with neurological reasons to need the IV IgG are not the same as people with other reasons to need it.

One needs to be careful if you have kidney issues or hypertension or have diabetes with the dose of IV IgG. It is a protein load on the body–so can annoy the kidneys and some forms of IV IgG are stabilized with a sugar or dissolved in a solution with some sugars.

Some people say that the manufacturer of IV IgG makes a difference to them with their condition. The home infusion company that you tried may have used a different product or rates of infusion. The manufacturing processes differ in the purification steps, stabilization, amount of IgA (which some people are sensitive to having present), etc. If one has a way that works and then tries to do it at home, they should make sure that it is done the same way at home (rate and hydration status, etc) and that they get the same manufacturer. It might not make a difference with them, but if they do not feel the same after the home infusion, it might be because of these differences.
WithHope for a cure of these diseases

Hi,
When i was first diagnosed i had 90mg a day, every 3 days for every 4 weeks. It goes by your body weight on how much you can get too. I was a 6’5″ 200lb male, so i could get more than a normal person.
Good luck and i hope it works for you.
Ryan

im getting 100g ivig every two weeks , giving at 50g a day over two days. i tolerate well. im a 200lb male.

Hello,

I’m not sure. It sounds like a lot to me. I used to get 35gr per day over a period of 8 hours.

Take care,

Marcio

Dawn,

In response to your posting of 10/30. I just wanted to respond that i get 70 gram in one day. The brand I use and find works better for me is GammaGuard. I go into the hospital as an out patient (as long as your in and out within 23 hours). I get there late afternoon, I am admitted into a room and by the time they order and get the IVIG up to the floor and get me set up with the infusion an hour passes. They check my vitals and they start with zolfran (?not sure of spelling), this is to help with nausea. They start the pump at a rate of 50 ml/hr. After a half hour, they check my vitals again. If I feel ok and vitals are good we increase the dose (increase depends on how I feel) usually 75 for another 1/2 hour, vitals again and increase to 100, 125, 150. I don’t usually like going over 150 but sometimes I went to 160 for a short while. The whole process the infusion lasts about 8-10 hours, depending how we do the increase. The infusion is finally done sometime during the early morning between 3:00 or 5:00 a.m. I then try to sleep a little and the morning I eat, shower and leave (sometimes I go right to work). I have no side effects at all.

Come December it will be a year since I was first diagnoses. My first treatment w/IVIG was mid december admitted into hospital (6 hr infusion each day for 5 days). Then in January I needed another round. (same 5 days). then every 2-3 weeks, I go back into the hospital for IVIG treat as I described above.

During one of my treatments in June, I had a heavyness in my chest and didn’t feel right. I called the nurse to lower rate, andcardiologist was called in and some blood, EKG and echo, they found I had blood clots in my heart. Next day after having an TEE (scope down throat to see heart) they discovered I had a hole in my heart and said that what they thought was clots was actually a mass. Following day I have open heart surgery to repair heart and remove masses. Surgery was success and I was up and about immediately. CIDP is worst then heart surgery. I am now on a blood thinner and continue with treatments.

Good luck and please keep me posted on your treatment. I would like to hear about your experience.

I am looking for information to find if anyone else who has had or having this course of treatment and if they have gone into remission. If so how long before they got that far. My doctor is against predisone so right now IVIG is the only thing I am doing. I just want to add that it does work for me. Usually on the 5th day after treatment I am recovered and feel perfect for about 1-1/2 weeks and the I start all over again.

Thanks for listening.

Laura

Dawn,

Keep me posted on how you do with the 70 in one day. You mentioned you get the 35 ml in 2 hours. How fast does it go in?

I get 85 grams every two weeks. 85 grams in about 5 hours running at
200ml/hr. ramping 50-100-150-200 every 15 minutes.

It sort of depends on your tolerance, age, health, and a whole bunch of other stuff over my head. Everyone is different, thats for sure. But don’t worry if your Doc sais its OK, Its OK. He or she and you, know yourself best and what you can do.–tim–

I get 70 gm in a 5 hour treatment done in my home by home heath care through Walgreens Option Care. I am 70 years old and the only side effect is a mild headdache following the treatment.