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Progress Update 12/05/2024
For those who may be interested:
I had my 3rd of 4 Vyvgart Infusions on 12/03/24. On 12/05/24 I went in for my first follow up with my neurologist since my diagnosis and everything appears to be working as hoped. I am currently back to my version of normal. (Eyelids, sight, mouth strength, etc.) As of today I no longer have to take the Bromide unless needed which knocks out 3 of those pills per day so that is good news.
That leaves me taking Vyvgart (once per week, 1 left), 1 1/2 Prednisone daily along with Calcium & Vitamin D2 supplements, and bananas and oranges.
In March 2025 I will be reevaluated and if all good I’ll start slowly weening off the Prednisone.
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4 Replies
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That’s great progress I hope it will continue.
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Thank you Mik
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It’s fantastic to hear that your third Vyvgart infusions are going well and that you’re seeing some solid results! It sounds like you have a good routine with your meds and those supplements. Keeping up with your calcium and vitamin D2, plus enjoying healthy snacks like bananas and oranges, is a great way to stay on track. Exciting that you’ve got a reevaluation coming up in March 2025! The idea of weaning off the Prednisone is a really positive step. Fingers crossed you keep making that progress. Take things day by day and listen to your body. Wishing you all the best on your journey ahead!
Jodi, Team Member
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Thanks Jodi,
I’m on my second set of four-weeks off of the vygart hytrulo and will start my third set of infusions March 4th. So far I am stable and we started cruising again with our last one on January 11th. All went well. I did catch the crud going around north Texas around Christmas and came through it alright.
I’m back to manual labor work around the house with no issues. I am taking more breaks, listening to my body while at the same building my body back up.
I’m very blessed but also know not to take anything for granted.
I am very blessed to have an outstanding care team that include my PCP, Ophthalmologist, Neurologist and Infusion Center folks.
I’ll be happy to get off the prednisone as the next step.
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