Anyone on VYVGART Hytrulo, a new treatment for CIDP?

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.

Has insurance covered your Vyvgart?

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 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.

I don't use V hytulo but switched to subcutaneous administration route for
IVIG and I am much happier as I can give it to myself. No veins involved.
Much quicker. I do it every 2xweeks on my schedule anytime I want. Takes me
about 3 hours and I can be up and around doing things while it is infusing
into my fatty tissue. Two companies make this kind. Tgere probare more too.
I use Hyqvia. Its a process getting on it but so much better for me.
There is another drug company that has the subcutaneous IVIG and actually
an easier system for a lot of people because it comes in prefilled
syringes ie less transferring into delivery devices. Sorry, I cant think of
the name right now. But Im sure of you goggle subcutaneous IVIG you will
find it. My insurance does cover. I have a medicare advantage. I have to
meet max out of pocket,but I reach that early in the year.
Hope this helps.

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 get IVIG every 3 weeks and it takes about 5 hours. I heard someone in a nearby chair getting Vyvgart and asked the nurse about that option. She said the Pharmaceutical rep told her it targets one area for CIDP whereas IVIG is more broad spectrum. This is all "hearsay", but thought I'd share so you can do some more research. I'm going to stick with IVIG for now as I know that helps and don't want to rock the boat. I don't think they know about causes for CIDP to be sure what would help more.