Capt_Carl

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  • Capt_Carl
    August 1, 2024 at 4:36 pm

    I’m giving this a bump.  I’ve asked my doctors about long-term use of IVIG especially given I now have some other medical issues that have arisen, cardiomyopathy and possible cirrhosis of the liver.  I just met with my cardiologist this morning and his research did not come up with how long long-term patients have been on IVIG.  He also found no literature that seemed to indicate that there any negative aspects to long term use.  But, he adds that he is not aware of anyone having been on IVIG therapy for almost 30 years (29 years, 2 months now).  Anyone else out there on IVIG over 20 years?

    Capt_Carl
    September 1, 2021 at 7:52 pm

    I’m on my current 3 week plan because we also tried to stretch my plan about six years ago.  I was doing well at 4 weeks and 80g.  We tried to go to 5 weeks and things just went to pot.  Going back to four weeks didn’t cut it.  Going to three helped, but still seeing a deficit after 2.5 weeks.  So we eventually went the full dose route at 2g/kg of body weight which brought me to 170g per treatment and that works.