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Experience with first Vyvgart treatment – is this normal?
Good morning, everyone. I’m new, and this is my first post. I received my first Vyvgart treatment yesterday at the infusion center. He did the injection on my right side belly fat. It burned for a couple of minutes but then resolved, but I was bruised. The bruise is significant today – a deep purple.
My main reason for asking is that my fatigue feels less today, just 24 hours later. Is that possible, or is this a placebo effect? Is it all in my head?
For background, I am a Gulf War veteran who has had intermittent neuropathy issues since the war and the nerve agent exposure. The neuropathy flare-ups got more frequent and more severe as time went on. As my Rheumatologist puts it, my body seems to spin a wheel to select my autoimmune manifestation every once in a while.
Most of my issues were sensory neuropathy in the legs and face. This worsened to include mild motor neuropathy years later, but these flare-ups would only last a few weeks and resolve on their own. Starting in 2003, things got more diverse and severe. A case of vasculitis cut off the blood flow to my gall bladder and reduced it to my liver. In 2005, I developed intracranial hypertension that squeezed my brain stem to point of paralysis. In 2006, my left side of my jawline went numb for several weeks. The doctor’s kept testing me for MS, Sjogren’s, etc. but I always came back negative for antibodies.
In 2009, I lost the use of both legs from motor neuropathy. The VA sent me to Johns Hopkins in Baltimore but my symptoms were resolving by the time I got there for my appointment weeks later. I ended up relocating to Maryland and seeing JH Neurologists and Rheumatologists annually while they struggled to find a diagnosis they felt they could justify outside of Intermittent Recurrent Polyneuropathy. Repeated skin biopsies from 2010 to 2017 showed that the nerves to my sweat glands were dying at a consistent pace, but the nerve biopsy from my right calf (weakest leg) showed no demyelination. A significant flare-up in 2017 left me paralyzed in both legs and my left arm, so they tried IVIG, and I responded immediately, with a function returning in a matter of days. They changed my diagnosis to CIDP but admitted that wasn’t a good diagnosis given my lack of demyelination.
Starting with IVIG infusions every 4 weeks, by 2019, we had to change it to every 3 weeks. I was becoming symptomatic again 23-24 days after completing IVIG. Months of physical and occupational therapy had me not only walking but running again. After four months of short-term disability, I returned to work. I still had fibromyalgia pain and chronic fatigue along with constant nerve pain in the legs, but I was generally able to function.
In 2022, I contracted COVID-19, and my immune system went nuts. All my symptoms got much worse, and I developed cognitive impairment issues and just kept slowly getting worse. I went on LTD, and they tried all kinds of medications, from steroids to Cellcept, with no improvement. In late 2023, I started developing swallowing and breathing issues. Finally, by October 2024, we were only getting about 10-11 days of benefit from the IVIG, and the impairment was so bad that I had to enact a Living Trust so my family could take care of me. My neurologist at Emory University in Atlanta (I had to move here so the family could take care of me) decided to change my diagnosis to MG and switch me from IVIG to Vyvgart.
That brings us to yesterday. After three months of fighting with the insurance company, we got approval for Vyvgart. Today, I feel more clear-headed and less fatigued than I have felt in years. I am still in pain and still feel bad, but I feel like someone turned the knob down from 8 or 9 down to about 6 or 7.
Is that possible? Could I see improvement that quickly, or is this all in my head?
Thank you for your reply.
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8 Replies
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Henry, I hope it’s working for you that fast! If I read the chart correctly from the actual clinical trial as shown on the vyvgart.com website, it looks like the *average* person saw a 2.6 improvement in their ADL score within the first week so it seems possible you could start seeing some changes ruight away.
https://www.vyvgart.com/gmg/about-vyvgart/why-vyvgart#accordion-8e4b482f04-item-8221e0fe45
It may very well be that targeting that particular receptor is exactly what you need and this drug is going to make a big difference for you. I cetainly hope so, you’ve been through a lot!
I don’t know if you’ll find anyone to give you astraight answer to your question. The
Vyvgart people probably can’t for various legal and compliance reasons. Enjoy feeling better regardless!vyvgart.com
Learn about the effectiveness and safety of VYVGART. Please see Important Safety Information.
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Hi, I’m new also. I was diagnosed with MG first of June 2024. The doctor put me on pyridostigmine three times a day right off. I took that for a while. I had to go to 4 times a day after a couple of months and I could feel I was getting weaker. I developed Covid and Flu A the first of September and had a time getting over that. I was in ICU and then a room altogether for 5 days. My neurologist did plasmapheresis while in the hospital. It took about 3 weeks to get over that. He put me on prednisone with the pyridostigmine. I did ok til about November. I went to another neurologist and he started me on Vyvgart infusions. Within 3 days of my first infusion it was like almost all my symptoms were gone. (I had droopy eyelid, chewing and swallowing problems, holding my head up, problem with laying flat of my back, fatigue, talking, smiling, and probably a few more.) The next three weeks I had the rest of my infusions (4 all together). The last one was January 16, 2025. I have felt great so far. I’m still on pyridostigmine 3 times a day and prednisone 7.5 mg once a day. I’m trying to go down to 5 mg a day. I think Vyvgart is a game changer for me.
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I wish you well. I’m a Vietnam Vet with AO problems and MG is one of them. The VA couldn’t come up with any solutions so I found a Nero that deals with autoimmune disorders. He has given me Pyridostigmine and that is helping.
Good luck, feel better.
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Henry — as a direct answer to your question, and taking my own experience into account, the answer is YES! As of this coming March, I will have been on Vyvgart infusions (sounds like you’re getting the Hytrulo form) for one year. I get the infusions, once a week for 4 weeks, every 2 1/2 months or so. More or less spot on according to the Vyvgart website.
There are times when I notice a drastic improvement in my speech and fatigue level by that evening…of the first dose! This stuff is amazing — expensive, but amazing.
I also realize that things can change over time with MG. Before Vyvgart, I had spent about 2 years on IVIG and it started out great. I then had to gradually introduce prednisone as a support for the IVIG. Then, like you, I had to increase the frequency to the point where my neurologist and I needed to go down a different path. Enter Vyvgart.
I’ve since weaned completely off the prednisone (boy, my knees miss that stuff 😉 and the only ‘support’ med I take on a daily basis is Imuran. As time goes by, I start to take Mestinon as needed until we realize it’s just time for the next round of Vyvgart. My understanding (please correct me if I’m wrong) the Vyvgart Hytrulo is, in essence, the same dose that I’m getting via IV. Your slow-push injection takes just a few minutes; my IV takes 50 mins.
My hope for you (and for me 😉 is that this stuff is the real thing for as long as it takes to find a cure for MG. You need something positive like this in your life. You’ve really been through the wringer.
Thank you, Henry, for your service.
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Hi. I was diagnosed about a year ago after playing round robin with so many doctors over a course of about 7 years with MG symptoms. I had no knowledge of MG prior to my diagnosis. I am curious, I too just finished my first four week round of IV Vyvgart, does anyone else have the LRP4 antibody? If so how are you responding to trx with Vyvgart? My neurologist said not a lot of MG patients with this antibody so we are using the same “toolbox” to trx and hope for the best.
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Hi Henry,
First, thanks for your service to our country! In response to your question, I experienced improvements in my speech and swallowing before I left the hospital after my first infusion. I couldn’t speak or swallow a pill on that first day and at the end of the infusion, the nurses could understand me when I spoke. I improved significantly that first week. I hope that the injections continue to bring quality to your life!
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Hello Henry,
I’ve been through several infusion medications over the past 7 years. About a year ago, I transitioned to Hytrulo after infusions of the same drug (Vyvgart). First, I’d like to address the bruising. After several injections, my last one gave me bruising. The nurse giving the injection pinched the skin while giving the injection. Previously, none of the other nurses did that, and I had no bruising. Maybe you could mention that before your next injection. I have definitely had good results with the Vyvgardt products. My cycles are 4 weeks of injections, followed by a 5-week gap. I hope you enjoy success with your treatment plan.
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Hytrulo, I was curious is anyone currently doing Hytrulo 1 week on and 1 week off. I was on 4 weeks on and 4 weeks off for about 1 year but about 2.5 weeks after last injection i was having strength drop and was have a lot of symptoms. I have 2 neurologist’s helping me over the past few years from Ventilator to really struggling to get my MG under control. Currently i am 15mg prednisone daily, 1000mg of CellCept, Pyridostigmine 90mg every 4-6 hours my very own MG cocktail, Hytrulo 2 weeks on and 2 weeks off. I am still struggling during my 2 weeks off hytrulo. I am asking about 1 week on and 1 week off i think i will be able to maintain level that way. I am curious if anyone is doing that. vvygart wont confirm or deny some people are doing it since it is not directed by MFG. so just curios … Thanks for help
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