Kevin Hillock
Forum Replies Created
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I am on Vyvgart and the costs for 4 infusions, considered a cycle, are around $85,000 with a co-pay of over $5k every other month. I filed for disability and after two years was successful. I was not ready to retire financially and due to the severity of my symptoms was forced to. I applied for financial aid through the web site https://tafcares.org/patients/ and was accepted. They pay for all MG related co-pays and my Social Security Medicare month premium and my Medicare Advantage premium. If you are not currently receiving Social Security disability should get a lawyer that specializes in such procedures and apply. I live in Northern Virginia and could give you the name of the lawyer I used. There is an upper limit on your liquid assets, not to include your house.
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I have had four rounds of Vyvgart and have not had any noticeable side effects. But with UTI or other infections they could happen at any time and my good luck may or may not hold.
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If he is on prednisone this could be the culprit. You need to also have his blood sugar checked. I was on a similar amount and my legs swelled to the point I thought my feet would pop when I was walking. I am a type 2 diabetic and I was keeping my A1c below 6.5. When I went on Prednisone my blood sugar climbed to over 500 and my A1c went over 11. I have had to reduce my Prednisone to below what my neurologist advises but it is that or deal with uncontrollable diabetes
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I developed MG while working for a large Health Insurance company as a contract-to-hire. I did not tell them of my diagnosis but my manager became aware of it when I was giving a demo of the application tool I was developing. While talking, I started to slur and after explaining my slurring was not due to alcohol she informed my that I could not be offered a permanent position. This was reinforced by the Director of the group I was in later that day. The next day they back tracked and said that they meant to say the position I was to fill had been pulled back to accommodate the new VP’s hire. They later said the position was still there but, unlike contract-to-hires in my group, I would have to interview for the position. I was never called to interview but kept getting calls from a new developer to help with my application. So for this company any mention of MG would never get you an interview. To be honest, currently I would not be able to perform at an acceptable level due to the severity of my symptoms, mainly double vision.
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I filed for Social Security Disability (SSD) and after 1.5 years I was successful. I used a law firm that specialized in this process. The dollar amount difference between regular and SSD payments is not a whole lot. But you do qualify for Medicare. I would be willing to talk directly to you by phone but I am not sure if including my phone number here would be an MG site issue.