Heather
Forum Replies Created
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Thank you Ashley! Yeah, I waited on hold for an hour and gave up! I’ll try again :). I want to ensure I’m aware of what they do and don’t cover.
Heather
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I am just now learning more about this very issue – look up “primary immune regulatory disorder.” I am being treated by an immunologist who specializes in PIRD – we discovered that I not only have an immune deficiency, but I also have auto immune and auto inflammatory diseases, and it is a problem with immune disregulation. Catching the antibodies is extremely difficult. So, We have had to do high dose IVIG along with high dose prednisone (support AND suppress my immune system). Now we are going to try a slow transition to a DMARD to supress T-Cells (the driver of many auto immune conditions) in the hopes of regulating that aspect of PIRD. Cutting edge of science stuff – I am grateful to have an immunologist who knows about this!!! It took me three years to find her!!!
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I have a port – I’m a tough stick and my veins are shot after years of infusions. I get 5 days of ivig every 18 days. I have never had any issues with it, though I have a fabulous infusion team!
if anyone has questions, I am happy to video what it looks like to access the port when I go in next week. I’m also happy to answer questions.
heather
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I have a very rare primary immune regulatory disorder in addition to LEMS. Going through all the immunological testing taught me more than I wanted to know about the impact of IVIG on antibodies. Bottom line is that any tests done with ivig in a person’s system will be inaccurate-you have to be off ivig for 3 months to get an accurate test. I went through that 3-month flush out…and it caused a runaway infection that nearly cost me my life, followed by myesthenic crisis. Plus side? I got a diagnosis and hopefully I’ll never go through that ever again!!!
Heather
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Heavens yes… I will write more later today when I’m able but to be honest the discrimination I’ve experienced this last year has been shocking. I am so grateful that you brought up this topic!
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My daughter is 14 and showing signs of LEMS. I can’t find any pediatric neurologists who take it seriously tho because she comes up negative on the fractionated antibody tests. I did too – until they finally caught the vgcc antibody once. Thank goodness for a persistent neurologist!
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That’s today at 2 pacific? If so I would love to join, tho I can only stay on for a few minutes
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I’m back to the same question as I am having another flare of LEMS after having it fairly controlled for the last two years. I also have an immune deficiency so I need to keep that in mind.
when I have done ivig for LEMS my dose is much higher than for immune deficiency. I assume that’s the case for others too. This time my neurologist is considering 30g/day x 5 days as a loading dose… What are others taking as their loading then maintenance dose?