[Frank Morrow]

Hello DD,

I’ve been on Vyvgart since November 2022. I have gone to an ambulatory infusion center during that time. I have 1 infusion per week for 4 weeks and then I’m off for 72 days between cycles. This usually means that I have about 5 cycles per calendar year.

Vyvgart is not my only medication for MG. I also use Methotrexate 40 mg once per week. My MG-ADL score is about a 3 generally after the infusion cycle.

If you’re looking at how Vyvgart works it’s very good at flushing out the bad IgG from your system so as it doesn’t attach itself to your acetylcholine receptor sites and cause damage.

In my opinion and experience you and your doctor should give any new medication at least 3 or 4 infusion cycles to get the full effect of the medication.

I hope that this helps you in your decision making process.

[Beth]

I have been on Vyvgart for 2 years. It has worked well with my mestinon meds. I do 4 weekly infusions and 4 weeks without. A nurse infuses me at home, which only takes about an hour.

I have not noticed any side effects except that I am tired for a half day after.

I hope this helps!

Beth

[George Tvardy]

DD, I was on a similar medication regimen for my generalized MG (prednisone, Cellcept and Mestinon, supplemented with IViG treatments). My MG affects my speech, chewing and in rare cases, breathing).

 

IViG got to the point that treatments had to occur much more frequently. My neurologist switched me from IViG to Vyvgart, and it was a godsend! My symptoms are much less severe, and I feel like I have my life back. As a mental health therapist, my job is A LOT of talking, and now my speech is so much better. No slurring except for maybe a little bit that last week before my next Vyvgart infusion cycle. I do an infusion every week for four weeks, and I get four weeks off. For me, this drug is really effective. However, different drugs work for different individuals.

 

The exciting thing compared to when I was initially diagnosed five years ago is that there are now multiple meds to treat MG (Vyvgart, ultomiris, rystiggio, soliris, zylbeysq and now immavy. I personally am grateful for all the recent advances and I really feel blessed by my neurologist and other care team members who provide my care.

 

I’m not a physician, so I can’t make a recommendation about your particular medication regimen, but I would highly recommend that you talk to your physician about these newer meds and if one would be right for your situation. Good luck, and my thoughts and prayers are with you. Hang in there!

[nannymcv]

I started Vyvgart mid December 2024 and ended mid January 2025. It worked great but I was in bad shape. Couldn’t chew long without giving out, couldn’t talk for long without my voice giving out. I would get so tired, I couldn’t do much of anything. After the first infusion, just about all my symptoms were gone. I went about 2-1/2 months and I was getting some symptom back so the dr ordered another round. I couldn’t see as much difference as the first round but I wasn’t in as bad shape as the first one. I go see my dr on the 22nd of July and he will probably order another round. It works well with me but I’m still on Pyridostigmine 60mg 3x day and prednisone 5mg once a day. I really want to get off of that but Dr said I needed to keep taking it. I was diagnosed with GMG June 2024. Hope this helps.

[dunc]

Thanks for this question…I am waitin for a response from my insurance as to whether they will cover Vytrullo…will be very interested in seeing the responses to your note.

[Kent Moore]

Vyvgart was a life-changer for me — about a year and a half now. My cycle is once a week for 4 weeks, and then about 2 months before the next cycle. No more Prednisone and very little Mestinon (I’ll maybe use a few as I get closer to the next cycle).

I’m also on Imuran every day. It seems to be helping to extend the positive effects of the Vyvgart. Who knows, maybe I’ll be able to stretch it to 3 months between cycles. We shall see.

What ever you and your neurologist decide, I wish you positive results.

[Nels]

I was diagnosed with MG last October. I’m a 77 year old male and previously in relatively great health (aside from a heart attack 9 years ago. My 3 stents seem to be working well and I’ve always been able to remain active with working out, golf and yard work. My MG has been Bulbar, affecting speech, swallowing and eating. Pyridostogmine bromide (3/day), and prednisone (5mg) held my symptoms at bay initially. I had. Hip replacement in early February and symptoms began to be a problem again and neurologist increased dosage to 6 PB tablets/day. Eventually the meds were having little or no effect and I was then switched to Vyvgart infusion. The results were miraculous Vyvgart is administered in 4 weekly infusions with a 4-5 week break until the next 4 week cycle begins. I just completed my second cycle. Each infusion is a one hour process is an out patient procedure and I’m required to stay at the infusion center for 30-60 minutes to ensure there are no side effects. I’ve had none to date. My neurologist has also kept me on 2 pb tablets/day nd and 5mg of prednisone/day but I’m going to ask if I can discontinue those 2 meds a I’ve skipped them periodically with no apparent adverse effects. I’m now scheduled to switch to Vyvgart injections at the same outpatient clinic, shortening the process to 1/2 hr sessions for the 4week cycle. I am extremely satisfied with Vyvgart

[bmg]

I have been diagnosed with MG back in 2013 and have been stable until 2024 for the most part. Just before readjusting my medications in October 2024, I had a severe injury to my neck requiring surgery. This put my MG procedure change on hold until May 2025. I have been taking Mestinon since first being diagnosed. With needing increases in dosages over the years. Since just prior to my neck injury and surgery, I was experiencing more difficulty speaking and swallowing. I needed to have a PEG Feeding Tube put in due yo my swallowing issues and inability to take my medications orally or eating food. It was apparent that Mestinon was not as effective as it once was. My strength was diminished greatly and I get fatigued more often and quickly than ever. So, starting on Monday, 7-14-25 I will be starting Infusion Therapy with Vyvgart.

I am excited and encouraged about my prospects based on most of the comments I have read here.

I will definitely keep everyone posted about my progress. Thanks for the input. I am normally a very positive person and despite MG, I have always tried to remain upbeat especially during my symptoms outbreaks. I’m praying that Vyvgart will be the help in keeping MG at bay. I want to be able to travel with my wife to Hawaii next February for her Medical EU Conference. I know, selfish me. Haha

[Marguerite Thibeau]

I was diagnose with moderately severe Bulbar gMG in 7/2018. I tried almost every med available and wasn’t very stable. I averaged 6 weeks a year in the hospital. My Doctor had recommended Vyvgart to consider when it was in trials. She had me read the info from the trials so I understood the medication and it’s success rate. As soon as it was approved she recommended trying it as I had not done well on all the other meds except Plex and didn’t want to have a port.

I started Vyvgart 3/2022 and saw great improvement. I stopped taking all the meds that were making me sick. I haven’t had a hospitalization since, and no flares. My Doctor switched me from IV to Hytrulo injection as soon as it was approved, then to self injection. My trip to the Infusion Center took 5-6 hours which exhausted me. Now my treatment takes just a few minutes! She helped me find a schedule that met my needs. Some patients do 4 weeks on, then 4 or more weeks off. Some work with their Doctor and find a schedule that gives them stability.

We are all different, nothing works for everyone. I worked with my Doctor to find the best treatment for me, and the best schedule based on my needs. I read the literature and trial info on each drug, called the manufacturer with my questions, they have help lines. We can be very active in directing our care and finding the best fit. It’s empowering!

I can count on meeting obligations, make plans and keep them. My results have been more than I expected. We don’t have a cure yet, but we have actual treatments, not just symptom suppressors. Good luck on your journey.

[nora]

Hello,

I began Vyvgart in February 2024. It took 3, 56-day cycles. So in mid July I woke up and realized how normal my life had become. In that time I stopped mestinon and was decreasing prednisone.

Unfortunately, in February, I experienced a terrible MG flare, requiring a rescue dose of IVIG. I was set back to where I had been the year before. By April I had another flare requiring a hospital stay and IVIG again. Recently in June, I averted the hospital with shortening my cycle to 49-days.

The question: is Vyvgart no longer working? The answer is yes. My mg-adl score went from 15 to 8. Ironically, I’m close to feeling like last July and experience minimal to no side effects. The problem is my doctor won’t adjust the dosing frequency (and fight insurance coverage) for my specific needs. She may force me to find another drug. This is difficult as it took 4 years to finally feel like I may have some quality of life. Actually, considering looking for a new neurologist that may fight a little harder for me.

[Debbie]

Vyvgart hydrulo the best. A shot instead of infusions. So much easier. Works so well but for me I need other drugs as well. Between cellcept and 4 weeks on and off Vyvgart I’m doing soooo well. If you aren’t doing well it absolutely worth a try. Good luck to you.

[dunc]

So grateful to all of you who have posted your experiences….