← Return to Anyone on VYVGART Hytrulo, a new treatment for CIDP?

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I have been on Vyvgart Hytrulo almost 6 months with mild improvement. I’ve had upper respiratory and sinus infections this winter, but not sure if that is a side effect or just from all the gunk my granddaughters bring to me from daycare. Having issues getting the prescription filled again (a story in itself), so will have missed 2 doses as of tomorrow. Had quite a burst of energy and easier to get up and stand last week, but am tired and weak now, so maybe helping more than I thought. This is kind of a last-ditch attempt for improvement for me. I’m now 64, was diagnosed by Dr. Dyck at Mayo in 2003 as a “dirty CISP” after sural and spinal nerve biopsies in addition to all the other testing after searching for 5 years to figure out why my feet and legs were tingling and going numb and I was having trouble walking. Because of the significant damage done in those 5 years he was not optimistic but not hopeless either. My disease has progressed to a full-blown CIDP diagnosis now. Am now in a wheelchair secondary to a leg fracture and subsequent muscle weakness and wanted to try the Vyvgart to see if I could regain enough proximal strength to get back to using a walker. My neurologist in Missouri was very willing to help me give it a try and the intent is for me to be on it a full year before we make any final decisions about continuing it.

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Replies to "I have been on Vyvgart Hytrulo almost 6 months with mild improvement. I’ve had upper respiratory..."

My husband suffers from CIDP and has been getting Immune globulin infusions for more than a year. We recently talked with his neuro PA about Vyvgart as his nurse is having more and more trouble accessing veins for his infusions. Are you on Medicare and a secondary insurance that covers your treatment? And did you have IVIG infusions prior to Vyvgart? He has infusions every three weeks for two days, which takes several hours each time, and getting the injections sounds easier. We are just a bit concerned about making a change as he does get some improvement of the neuropathy in his legs after infusions. Any thoughts on making the change or getting the same improvement from Vyvgart?

I hope this works for you and I hope you are getting PT-essential in my experience for maintaining or improving. Drugs are not enough on their own.