Gary Lidiak
Forum Replies Created
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I have been on Vivgart for over two years now and have had fair results. I started this week on Zylbrysq as an addition to my Vyvgart treatments. The shots are tough but not terrible. Very few side effects early such as headache and stomachache but they are subsiding now. Looking forward to feeling improvement over the next few weeks. Stay tuned. i-am-blessed.com.
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What was the specific reason you were given that you were not a candidate? I am using it and it is a miracle drug for me. However, that’s why they call MG the “Snowflake Disease”. You never know.
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First off, offended is a very strong word; I never find myself getting offended. MG is a very rare and unknown disease. How do we expect our friends, family, and others to understand what we are going through? It is not a one size fits all disease. I do like to hear ideas that could help symptoms I have. For example, I was told pineapple juice helps phlegm which I was having a lot of. It worked. Not all suggestions are as helpful. I have a number of neighbors who one day told me as a group, that I needed to walk, exercise, and lose weight. They said that would allow me to get better. Instead of being offended, my wife and I printed a handout explaining what MG is and how it relates to me. We gave the handouts to them telling them to read at their leisure. Everyone approached us later saying how informative the paper was, what a greater understanding they have, and thanked us for taking the time to do it. We now have a blog that explains MG and how it relates to me personally. We refer folks there when they have questions.
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BY THE WAY…I have had NO side effects at all on Vyvgart.
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This week I received the third IV of the new drug Vyvgart. I am still seeing a great improvement over everything else I have tried. I will receive my fourth IV next week and that will be it until I need it again. This drug is a miracle for me, and I hope everybody gets a chance to try it and that they will have the same results.
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Wayne,
You can contact the Vyvgart team yourself and have them contact your neuro team to get things started. I was the first person in Houston to receive the Vyvgart treatments because we pushed our Neuro team to work with Vyvgart. Now I am down the road with the new treatments and living differently that I have in years. Not a cure, but really has made a difference. Go to the Vyvgart website and follow the leads to them. They will help you get started. Good luck. -
John,
Over time Vyvgart should replace many of your meds if it works for you properly. You must start out the first series with 4 infusions over 4 weeks. In other words, one infusion per week for four weeks. The infusion itself takes about one hour, then they monitor you for 1 hour. Not bad at all compared to IVIG and others. You MUST take the first series over 4 weeks. After that you monitor your symptoms using a MG ADL score that is sent directly to Vyvgart. If your Dr. is doing this any other way tell them to contact Vyvgart directly for instructions. After your first series you and Vyvgart will monitor your symptoms and decide when to do the next series. Hope this helps.
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That is great. I kinda felt “refreshed” is the best way to describe it for me. I hope you continue to see improvements.
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Yes, it was 13 baselines.
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The day after I noticed some improvement but the second day after much more. Each treatment has not improved allot, but I am able to do things I couldn’t before. Walking with no walker or cane, no slurred speech, climbing stairs slowly but able. I am very happy. I have a couple of eye issues but overall, I am doing better. May take several months for further improvement but I am on the road to a better place.
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I noticed improvement the second day and significant improvement the third. Ongoing it has leveled off. I am better than I was on anything else but still have room for improvement.
We have a blog that chronicles the process.
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Yes I am