[art chick]

I started IVIG again after only two and a half weeks out of the hospital because I need it so bad and will be doing another five days in two more weeks. Today is going to be day three and already my breathing has come down from 26 respiration/minute at rest to 12 between doses of mestinon and my legs are very strong again!

My question is they infused it to a rate of 120 per hour in the hospital and now they were going to go to 360!! I asked them to leave it at 120 as the highest. Should I try a higher rate? I seem to be doing well but I don't want any drama. What is the rate you guys use?

Thanks, debra

[Maxwell'sMom]

I can't have IVIG due to kidney disease, but everything I've heard from others, is that keep it as slow as possible, as not to cause any problems with becoming sick. And from what others have said, the sickness from it, is pretty bad.
You know that old saying, "if it ain't broke, don't fix it", I think this might apply to IVIG's.
Love Lizzie

[justdeb]

Debra, run don't walk away!!!!
I tell ya what I have had IVIG now for oh 7years or so at once a week.
I would never ever ever ever dare go over 150 for a rate!!! That is totally bizarro!!!!

If they do that you need to find some place that does it properly!! that rate, I don't know any one who does that fast!! That is totally blowing my mind!!

Nothing may happen at that rate with you, but I wouldn't dare try it nor would any of the IVIG patients I know.

[art chick]

thank you so much for you replies. . .i knew something just didn't feel right about all this. i went yesterday and told them "no, thanks" yet again. my infusion at 120 only took 3 hours so i don't know what all the fuss is about trying to get me out of there faster but i am feeling good at this rate so i am not about to make myself ill by pushing it. two days to go. . .

[Juanitad]

My rate is 125 for the first 15 minutes to make sure everything is fine and then it is increased to 175. I don't have any problems at that rate. Some people in our clinic go as high as 225, but I have never heard of 360!

FYI - I've been doing IVIG for about 6 years now and it works great for me.

Good luck.

[art chick]

today is my last day of IVIG and yesterday i got my answer in spades. we started at 40, then 80 and my leg fell asleep then my heart started racing. we waited an hour for everything to settle. then we went to 100 and when i tried to get up to go to the restroom i was shaking all over and weak and had my legs giving out. we never got past 100 yesterday and my b.p. went up at the end and i left in a wheelchair. they thought i was totally exhausted. i don't know. the infusion the day before had run until 7 pm and this one started at 10 am. maybe they were just too close together???

i'm okay again this morning. .. so we'll see how it goes.

[tnalawson]

Please let me know how it goes my husband has Generalized Myasthenia with one crisis and is in a bad spell now however he normally spends 5days a week in bed and only maybe 2 active. He has MG, Autonomic Neuropathy Small Fiber, Peripheral Neuropathy, Spinal Stenosis and Spondylosis, Fibro, Hypertension, Edema, Migraines, and multiple others include testerone and vitamin deficiencies.

The script says 400 mg for 5 day consec. for 6 months each month. Well the infusion doc isnt familiar with hubbys MG or Auto Neuropathy and said he would try to infuse faster, he normal does chemo and only IVIG for patients needing a light dosage between chemo. He said he is going to try to push next months dosage in, well in one day..400 mg in one day??
Not what his doctor said, but we are in GA and his Neuro is in Cleveland

[Shari_W]

Artchick,
I am glad that you are doing better today Sometimes IVIG reactions are just plain confusing. I've been getting IVIG infusions for 5 years now and always start low at 35.They increase it slowly and usually my max rate is 240.
Sometimes I can go as high as 280 but if I get that "funny feeling" then my nurse will go slow it down. I get them at home and have had the same Nurse for about 4 years so she knows me and my body well.

I hope you continue to feel better and you won't have problems with your next infusion. As always keep telling them how you feel during the infusion and insist that they slow it down when you start feeling bad. You know your body better than anyone else and only you can tell them what you are feeling like at that given moment. They have to listen to you and slow it down when your body is reacting to it.

Blessings,
Shari

[art chick]

i did much better with the last dose of IVIG yesterday but still had trouble walking at the end of it, just a bit shaky and unsteady for a couple of hours and then i came around. but i felt much better throught the process. i requested the same nurse who knew the situation from the day before and she went very slow, kept the rate at 80 the whole time and it made al the difference. i really did well on the first three days so i just think maybe i got a funny fourth batch or it was just too close together. . .

tnalawson--my dose is 10% in a 300ml bag. the manufacturer is gammunex IVIG for 5 days every 2 weeks right now. i am unsure of the conversion when you are saying 400mg??? they start slow, based on weight and then go up every 15-30 minutes as you tolerate it. . . . good luck with your husband's treatment. i really hope it helps!

[tnalawson]

Thanks so much. I am glad to hear you tolerated it better. Why are u getting ever 2 weeks

Originally Posted by art chick

i did much better with the last dose of IVIG yesterday but still had trouble walking at the end of it, just a bit shaky and unsteady for a couple of hours and then i came around. but i felt much better throught the process. i requested the same nurse who knew the situation from the day before and she went very slow, kept the rate at 80 the whole time and it made al the difference. i really did well on the first three days so i just think maybe i got a funny fourth batch or it was just too close together. . .

tnalawson--my dose is 10% in a 300ml bag. the manufacturer is gammunex IVIG for 5 days every 2 weeks right now. i am unsure of the conversion when you are saying 400mg??? they start slow, based on weight and then go up every 15-30 minutes as you tolerate it. . . . good luck with your husband's treatment. i really hope it helps!