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Old 06-27-2013, 10:06 AM
StephC StephC is offline
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Join Date: Jul 2012
Location: Fort Lauderdale, FL
Posts: 286
10 yr Member
StephC StephC is offline
Member
 
Join Date: Jul 2012
Location: Fort Lauderdale, FL
Posts: 286
10 yr Member
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My experience with IVIG is that it takes several consistent doses to start to really show improvement.

I have been receiving IVIG since December. After the initial dose it was decreased to 1g/pound every 4 weeks but that was producing nominal benefit so it was increased to the initial loading dose 2g/pound and changed to every three weeks. After the 2nd higher/more frequent dose I have had a significant improvement (meaning every three weeks I have about 12 days of being at about 50-60% of my old self). Not great but markedly improved from the lower dose or no IVIG. Other than a bad headache the first time I have not had any adverse reactions but I receive 5% Octagam which takes 9 hours to infuse each of two days every three weeks. The nurse has mentioned there is a 10% formula but I think perhaps the reason I have not had problems is due to slower infusion rate so I'd rather not.

I drink LOTS of water and no tylenol at all because my liver cannot tolerate. I had started imuran but had to stop after 3 months 3/25/13 due to liver toxicity. I am now waiting for liver to return to normal and we will try Cellcept.

Also I have discovered I do have multiple serious health problems some of which I didnt even realize as once I got my diagnosis I perceived everything as MG related (i.e. tarsal tunnel, degenerative disc disease)
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"Thanks for this!" says:
cait24 (06-27-2013)