1. < Autoimmune Diseases

Anyone on VYVGART Hytrulo, a new treatment for CIDP?

Posted by kgitti @kgitti, Jul 19 12:18pm

I just came from my neurologist and learned about VYVGART Hytrulo. It is a newly approved immuno suppressant option for chronic inflammatory demyelinating polyneuropathy (CIDP). https://vyvgart.com/vyvgarthytrulo-cidp

https://www.fda.gov/drugs/news-events-human-drugs/fda-approves-treatment-chronic-inflammatory-demyelinating-polyneuropathy-cidp-adults

She said it will be really expensive and a battle to get my insurance to pay for it but it looks promising. My insurance pays for SCIG Hyzentra 100% thanks to her. So maybe she can pull it off.

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ginger3344 | @ginger3344 | Dec 1 2:21pm

iam starting the Vyvgart next week ??? I'll let you know how it works for the CIDP i got from the covid vaccine, any one else?
Steriods did not help The IVIG did some but then after about 40 infusions I started to have other problems..Then 4 infusions of rituxain it helped some but now I am tired all the time!

REPLY
2 replies
amkie | @amkie | Dec 1 4:26pm
In reply to @ginger3344 "iam starting the Vyvgart next week ??? I'll let you know how it works for the..." + (show)
@ginger3344

iam starting the Vyvgart next week ??? I'll let you know how it works for the CIDP i got from the covid vaccine, any one else?
Steriods did not help The IVIG did some but then after about 40 infusions I started to have other problems..Then 4 infusions of rituxain it helped some but now I am tired all the time!

Jump to this post

Yes, let us know how it goes. It is such a frustrating illness. There are
so many fluctuations in how I feel, how I can move, how bad the numbness
and paresthesia is, how tired my muscles are, or how full of energy I feel
and how somtimes if I don't move, absolutely nothing hurts. This reverses
at will. Weeks then months slip by and all the while things are trending
slowly in a positive direction for the past 18 months. Still a mystery to
me.

REPLY
77smith77 | @77smith77 | Dec 2 7:12am

I have been on Vyvgart for over a year now with great results. Not Hytrulo, but the IV route. Myasthenia gravis was treated with Pyridostigmine, Rituxin, IVIG, Solaris, Pulse dose Steroids and Plasma Exchange with little result. 9 Hospitalizations, 5 in ICU at UofPenn and Philadelphia VA. Lost muscle mass and gained 30 lbs. I was looking into Hospice. I could not walk very far or hold on to things. I started Vyvgart and walked 9000 steps 3 days later. 36 sessions of cardiopulmonary rehab, diet weight loss back to 154 lbs, no hospitalizations. I am 79. Drove one of my cars in time trials this summer after not being able to drive at all for years. Just built a new deck and gazebo at my home. On the other hand another vet I talked to at the VA infusion is having no benefit from it. I was discourged from trying it because of side effects, but I had little to lose. Vyvgart prevents recycling of old antibodies rather than prevention of making new ones. wish you well on your journey. Never give up.

REPLY
2 replies
amkie | @amkie | Dec 2 8:45am
In reply to @77smith77 "I have been on Vyvgart for over a year now with great results. Not Hytrulo, but..." + (show)
@77smith77

I have been on Vyvgart for over a year now with great results. Not Hytrulo, but the IV route. Myasthenia gravis was treated with Pyridostigmine, Rituxin, IVIG, Solaris, Pulse dose Steroids and Plasma Exchange with little result. 9 Hospitalizations, 5 in ICU at UofPenn and Philadelphia VA. Lost muscle mass and gained 30 lbs. I was looking into Hospice. I could not walk very far or hold on to things. I started Vyvgart and walked 9000 steps 3 days later. 36 sessions of cardiopulmonary rehab, diet weight loss back to 154 lbs, no hospitalizations. I am 79. Drove one of my cars in time trials this summer after not being able to drive at all for years. Just built a new deck and gazebo at my home. On the other hand another vet I talked to at the VA infusion is having no benefit from it. I was discourged from trying it because of side effects, but I had little to lose. Vyvgart prevents recycling of old antibodies rather than prevention of making new ones. wish you well on your journey. Never give up.

Jump to this post

Thank you for your reply. Have you had any side effects like respiratory
or urinary tract infections? If so how frequent? How hard to treat?

REPLY
Mentor
Becky, Volunteer Mentor | @becsbuddy | Dec 2 10:44pm
In reply to @77smith77 "I have been on Vyvgart for over a year now with great results. Not Hytrulo, but..." + (show)
@77smith77

I have been on Vyvgart for over a year now with great results. Not Hytrulo, but the IV route. Myasthenia gravis was treated with Pyridostigmine, Rituxin, IVIG, Solaris, Pulse dose Steroids and Plasma Exchange with little result. 9 Hospitalizations, 5 in ICU at UofPenn and Philadelphia VA. Lost muscle mass and gained 30 lbs. I was looking into Hospice. I could not walk very far or hold on to things. I started Vyvgart and walked 9000 steps 3 days later. 36 sessions of cardiopulmonary rehab, diet weight loss back to 154 lbs, no hospitalizations. I am 79. Drove one of my cars in time trials this summer after not being able to drive at all for years. Just built a new deck and gazebo at my home. On the other hand another vet I talked to at the VA infusion is having no benefit from it. I was discourged from trying it because of side effects, but I had little to lose. Vyvgart prevents recycling of old antibodies rather than prevention of making new ones. wish you well on your journey. Never give up.

Jump to this post

@77smith77 WOW!!

REPLY
cheentsia | @cheentsia | Dec 4 1:53pm

My Mayo neurologist recommended I try Vyvgart Hytrulo as soon as the FDA approved it last summer, however, my local health care facility did not have it “in their formulary”. That meant my local neurologist was unable to prescribe it until it went through many layers of review and was approved to be added to their formulary. It’s been 5 months & I am still waiting. So, I recommend to anyone who wants to try it, first check to see if the facility you use has it.

REPLY
1 reply
amkie | @amkie | Dec 4 6:07pm
In reply to @cheentsia "My Mayo neurologist recommended I try Vyvgart Hytrulo as soon as the FDA approved it last..." + (show)
@cheentsia

My Mayo neurologist recommended I try Vyvgart Hytrulo as soon as the FDA approved it last summer, however, my local health care facility did not have it “in their formulary”. That meant my local neurologist was unable to prescribe it until it went through many layers of review and was approved to be added to their formulary. It’s been 5 months & I am still waiting. So, I recommend to anyone who wants to try it, first check to see if the facility you use has it.

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Good info. Sorry for your frustraing wait. I hope more places will get on board as it is used more and not be so new. Hope it happens soon for you.

REPLY
russbuettner | @russbuettner | Dec 5 7:49am
In reply to @ginger3344 "iam starting the Vyvgart next week ??? I'll let you know how it works for the..." + (show)
@ginger3344

iam starting the Vyvgart next week ??? I'll let you know how it works for the CIDP i got from the covid vaccine, any one else?
Steriods did not help The IVIG did some but then after about 40 infusions I started to have other problems..Then 4 infusions of rituxain it helped some but now I am tired all the time!

Jump to this post

I am starting Vyvgart as well. CIDP started in me a few months after Covid vaccine. Been on IVIG for 8 months and it seems to help a little but I have NF155 antibodies that generally don't respond well to IVIG.

REPLY
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