Anyone on VYVGART Hytrulo, a new treatment for CIDP?

@betoma, I moved your question about Vyvgart Hytrulo as a treatment for chronic inflammatory demyelinating polyneuropathy (CIDP) to this existing discussion so you can read about the experiences others have had and connect with them.

- Anyone on VYVGART Hytrulo, a new treatment for CIDP?: https://connect.mayoclinic.org/discussion/vyvgart-hytrulo-a-new-treatment-for-cidp/

Is this medication an option for you?

As I mentioned in one comment I am on monthly IVIG which works OK during winter months in FL. 6 months of the year we live in Canada north of the Minnesotan border. Finding a provider would be the same challenge for Vyvgart as there is no self administration available at this point however there may be in the near future. My condition came on rapidly with a fair amount of confounding factors but with a Guillain-Barre type onset. I was hospitalized at that time and stated on IVIG. I had trials of poorly tolerated steroids along the way. I can never directly associate my improvement with treatment but I did stop getting worse. I have steadily but very slowly been improving. Starting with very poor balance, bil footdrop and weakness in lower legs were hallmarks of what I was and am dealing with I have gone from using a Rollator walker 100% of the time to a single prong cane and now, in my home I can move around frequently without aids during my good periods.
I have considered Hizentra because of the self administer aspect and our travel pattern It is basically the same type of treatment as IVIG. Vyvgart it a new drug. Totally different concept. I am on "The Path" and have my very nice nurse assigned to me, but have not decided whether to try it or not yet. My most recent EMG and Sensory studies show slight worsening of neuropathy. Although at the time of the test only like 2 weeks ago, I did feel that way, right now I feel stronger and better then I did then and probably the best I have felt since onset. This disease is so mind bending. I might add that I work at getting stronger and improving balance every single day, many times per day. I do aquatic therapy and ride an adult trike and walk with trekking poles outdoors. Vyvgart is a big decision though and is so new. Good study results. I am looking to communicate with a person who is on it.

I have been on Hytrulo for myasthenia GRAVIS for 6 months. Was on Vyvgart Infusions for 3 years. Hytrulo is amazing. I should think it will be covered as it is really the only cidp treatment of its kind. It costs $65,000./ month for a weekly self injection. Go to Argenx website and learn about it. They have a program to financially assist. And can help navigate. Never let anyone influence a treatment decision due to cost. It can happen. It just requires doctors supporting the process to fight the insurance if need be. And often patients involvement. I hope it works well for you. Good luck.

@theresaag I talked my neurologist into my trying the Vyvgart back the first of the summer. By the third week/third shot, I was in a wheelchair. Was told by Argena (maker of Vyvgart) to hold on till the fourth and I should seen a difference. I didn't and the wife was ready to call 911. I stopped breathing while sleeping. My doctor quickly got me back on infusions, daily for four days and pulled me out.
I just had my checkup with the neurologist and she said she spoke in length with the representative on it not working with CIDP. I was not the only one she tried. It was made for Myasthenia Gravis and works well for it, but doesn't for CIDP.

@thecaptken153 how scary. I am sorry you experienced that.There does appear to be some differences in how MG patients do on infusions versus the self injectable. Were you on Vyvgart infusions or something else? For MG the infusions were originally dosed at 4 weeks on 4 weeks off. Over the course of 2 years, I had difficulty after the last of the 4 week cycle. Went to 2 on 2 off finally landing at weekly. So when they got FDA approval for Hytrulo (vyvgart) I was thrilled as it showed they had tested weekly dosing making me and my neuro confident in more frequent dosing. Here’s a list of all the auto immune diseases it is being tested for. I have not looked at how CIDP works, my only experience being my 56 yo daughter was mistakenly dx’d with it some 30 yrs ago. She subsequently likely has a muscular dystrophy genetic disease. I am seronegative , in other words , do not test positive for the antibody. I know it works in many MG cases and not so in others. WE are called snowflakes. We are all different!!! In so many ways. It appears many of the new drugs are being cross tested amongst other auto immune diseases. I saw the original post and thought I would share my experience. I wish you well and hope you are able to find a treatment that gives you good health.

I have CIDP and am considering trying Vyvgart Hytrulo. Had a relapse a year ago and have been getting IVIG infusions every three weeks but they don’t seem to be helping. I have had blood clots and have been hospitalized last year and the year prior with respiratory infections. If you have been on Vyvgart, have you had trouble with respiratory infections or any of the other problems they mention as being possible to take place? I was diagnosed seven years ago, in the hospital and rehab four and a half months and came home in a wheelchair. Took me two and a half years to walk again on my own, write legibly, etc. I was close to full recovery and got past the five year mark but had this relapse a couple months later. So now trying to find my way back again. I am also on a high dose of mycophenolate (generic for Cellcept) and gabapentin for the horrid neuropathy, numbness and tingling. Steroids actually saved my life first time around but had so much trouble w/tremors that my neurologist was hesitant to use again. So, if anyone could respond regarding Vyvgart, I would surely appreciate it. Thank you.

I have CIDP and am considering trying Vyvgart Hytrulo. Had a relapse a year ago and have been getting IVIG infusions every three weeks but they don’t seem to be helping. I have had blood clots and have been hospitalized last year and the year prior with respiratory infections. If you have been on Vyvgart, have you had trouble with respiratory infections or any of the other problems they mention as being possible to take place? I was diagnosed seven years ago, in the hospital and rehab four and a half months and came home in a wheelchair. Took me two and a half years to walk again on my own, write legibly, etc. I was close to full recovery and got past the five year mark but had this relapse a couple months later. So now trying to find my way back again. I am also on a high dose of mycophenolate (generic for Cellcept) and gabapentin for the horrid neuropathy, numbness and tingling. Steroids actually saved my life first time around but had so much trouble w/tremors that my neurologist was hesitant to use again. So, if anyone could respond regarding Vyvgart, I would surely appreciate it. Thank you.