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IVIG Dosing!
Good morning all!
I’ve noticed some inconsistencies with dosing of IVIG for LEMS patients and I’m curious as to what dose you are recieving.
I was told by my neurologist that LEMS requires “high dose IVIG” so I receive 1g IVIG per kg of body weight for 2 days in a row.
To break this down, I’m about 60kg and I receive 60kg on each day of my infusion for a total of 120g IVIG per month.
This seems to work perfectly for me.
What dose do you receive? (Please share your weight if you don’t mind OR the # of grams per kg you recieve
Hope to hear from you all!
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3 Replies
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Hi Ashley,
I am still “officially “ undiagnosed with LEMS since I was only positive for P/Q VGCC while on IVIg. However my dose is 2g/1kg. This was prescribed for polymyositis, which has since proven false diagnosis. I get 65g on one day every other week for “ monthly dose of 130g. I am 155lbs=70.3kg. I asked neurologist for every 2 weeks because it was only lasting 7-10 days before the energy went down & the “veil of exhaustion “ came. Every 2 weeks seems to keep me more level both strength and energy wise. But again I caution my diagnosis is still unclear after 5 years. The EMGs show post- vs pre- synaptic neuromuscular junction defect but seronegative for MG. However, the symptoms mentioned in this newsletter and response to mestinon, IVIg & prednisone are how my body feel. I have to find a neurologist who will LISTEN to me about how I feel & respond to drugs and work with me as to why as opposed to only thinking inside the normal disease box
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Wow. That seems like a lot!!!
For twelve years I have been on 0.4g/kg. The first dose was four days in a row. Then every 4-6 weeks.
I am about 55 kg so I get 20 grams every 4-6 weeks. I am now going 5-6 weeks between IVIG’s and doing well.
Bobbi -
Hey @searching4answers
Sounds like you and I are receiving the same dose for our weights! I’m so sorry you still don’t have an official diagnosis but I am happy that they are giving you treatment that helps! I know its frustrating having to push and advocate for yourself, especially when you feel no one is listening or taking you seriously. Don’t give up!
Hey @bobbi-lynn-berry!
It does seem like a lot, however it’s the dosage recommended for LEMS patients.
The Journal of Neurology published a study that found that “controlled trials indicate that in MG, LEMS, and DM, IVIg at a total dose of 2 g/kg is a highly useful therapy.”
You can read the article here.
Glad you’re able to spread your IVIG out, unfortunately that’s not something I can do at this time. I always have a decline the week of IVIG before my infusion.
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