IVIg and more questions

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Melissa D.
Regular Member

Date Joined Aug 2008
Total Posts : 451
   Posted 3/10/2016 10:51 AM (GMT -6)   
I have been approved by insurance for the IVIg treatment and am now in the pipeline for scheduling. I did speak with one of the nurses yesterday at the infusion center briefly and have to say I'm a bit more confused. My problem is Rheumy is in. San Antonio and I will be receiving treatments in my home town 3 hrs away, so it's not easy to ask questions about my current situation whenever I need and I am a bit of an anomily around these parts. I do have to get my pcp to underwrite the script, and the infusion center takes their orders from him; but he knows essentially nothing about lupus and my situation, he treats the common cold.

Here's what's baffling me: When my Rheumy and I began talking about IVIg he explained it was the consistency of oil and the treatment is very harsh, so it would take 2 to 3 days to infuse. I saw him this past Tuesday and he mentioned the first treatment could take even longer. Then when I spoke to the nurse at the infusion center and she figured the prescribed rate and my weight (I currently weigh 89 lbs) she told me it would take 5-6 hrs and they would infuse me in one day, total. Trust me one day would be great, that would be the same as my Benlysta used to be!

For those that have had IVIg what is your experience? Does the rate at which you're infused make a difference like some medications do?

Thank you in advance for your input.


Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 3/10/2016 1:04 PM (GMT -6)   
Rate of infusion can make a difference with side effects and complications if the infusion is too fast but most are done in 4-6 hours not days. Had it 5 days in a row and had no problems but some people do.


MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 3/11/2016 2:11 PM (GMT -6)   
25 years ago the IgG we kept in our laboratory blood bank for infusion came in clear bottles, was yellowish in color, but I don't know if it was oily. The IgG (IVIG) I get infused now each month is completely clear, but still comes in bottles. The amount you are given is calculated by your weight and the rate of infusion is originally set by your doc, but my nurses always ask if I'm still tolerating the rate, which I am. My IVIG infusions take 3-4 hours and I weigh 139. Love, Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Melissa D.
Regular Member

Date Joined Aug 2008
Total Posts : 451
   Posted 3/11/2016 4:10 PM (GMT -6)   
I by no means understand what is written on the script, so please I could be interpreting this incorrectly. I believe my nurse said the doctor ordered 2 grams per kilogram of body weight? Then the nurse at my pcp's office asked me yesterday if this was 10mg of Gammagard?

So, by the sounds of things 5 to 6 hours is reasonable. Thank you for putting my concerns at rest. Things are looking like I should be able to have my 1st treatment next week. There was a little confusion at my local pcp's office, but I think we are back on track now. Fingers crossed and prayers going up that we can get this going soon.

Thanks for your input Bill & Butterflake!

Married the love of my life, mother of 2 beautiful adult children, 1 amazing daughter in law, and 1 grandson who is truly a gift from God! lupus SLE 1996, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus NPSLE at 19. I try to live life as though everyday is a blessing, otherwise it would be hard to put one foot in front of the other...hugs
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