Vyvgart Hytrulo Infusions Wearing Off?

[MG Community Member]

The combination of Vyvgart and cellcept saved me. Only problem is cellcept takes many many months to start working. I had to do plasma exchanges until it kicked in. But now I’m great . 4 weeks on and 4 off. Cellcept 2 times a day. Good luck to you

[MG Community Member]

I’ve been on the CellCept since October.

I can’t do the steroids because of Type 1 Diabetes.

[MG Community Member]

I had the same problem. I called my Vyvgart Pathway and my Doctor and explained the problem. I asked to try every other week dosing so my symptoms would stay suppressed on the same amount of medicine. I’m much more stable on this schedule. I switched to Hytrulo, and am now starting self injections at home as I find the hours of driving to my infusion center tiring. I tend to push myself too hard so I listen to my body and rest when I over do. I’m so grateful to have a near normal life again!

Marge

[MG Community Member]

Did you make the switch to 1 week on and 1 week off?

[MG Community Member]

This Reply is to original poster. Problem with Reply button on other msgs.

I’ve been on Vyvgart Hytrulo INJ for over 2 years, prior to that I was on the Infusion Vyvgart for nearly 2 years and initially on IVIG infusions for 2 years. My break time between Vyvgart H injection set (4 weeks, 1 inj./week) is only 1 week. Vyvgart Hytrulo was initially wonderful and eliminated all MG symptoms on this 1 week break schedule. I asked to see if a 2 week break period would work for me. I tried this for 2 cycles and realized that I could not have injections of any longer break duration than 1 week. MG Symptoms were so much worse during the 2nd break week than what I had experience prior to taking Vyvgart. Now, over a 2nd year with Vyvgart Hytrulo, I am finding that I’m experiencing minor MG Symptoms with Facial/Oral & overall Muscle weakness to the point that I have resumed taking Mestinon and occasionally 10 mg. Prednisone on particularly bad days during the Break Week and often until the 2nd Vyvgart Inj week.

So, for now I’m staying on the 1 week Break Week between injections and that seems to work best for me. Hope you fare well with your treatment.

greynold99

[MG Community Member]

As we know, we are all different. I began VyVgart infusions 3 years ago, I went 1.5 yrs suffering those 3 down weeks. So went to 4 on, 1 off. Did this maybe 8-9 months, then I still was losing the crash on day 10, and needing 2 infusions to get back to baseline. In reality, benefited 3 out of 6 weeks. 2 months ago, I began every other week. It has been amazing! I have quite a tract record, but somewhere in there I think they realized many of us were suffering. My dr/ per this weeks meeting is going to try me on self injection hytrulo. I fear, it will be not absorbed as well as infusion, but we shall see.

[MG Community Member]

Hi Theresa, I just wanted to check in and let you know you’ve been on our minds.

You’ve been such an active voice here, and we’ve missed your updates about navigating Vyvgart and finding a rhythm that works for you.

I just wanted to send a note of care and say that we hope you’re doing alright in whatever season you’re in now. Absolutely no pressure to respond, just a reminder that you’re appreciated here, and your presence has always meant something to this community.

Wishing you good vibes! -Jodi, Patient Advocate

[MG Community Member]

I had a total MG crisis May, 2024 beginning the day following ACDF (anterior cervical dissector fusion) surgery. A week in ICU saved my life but I couldn’t get anywhere near functional in usual Selector & both instant & ER Mestinon. Dr put me on Vyvgart for 7 months. I had many, many side effects and essentially no improvement. Another month passed as we arranged for IVIG. First day’s dose was aborted when I got cardiac symptoms. ER team determined my heart can handle the treatment as long as we irate it slower than normal. I went back for the second day and did fine in slow titration. Yesterday and today I had a second IVIG. I have seen mild improvements and am excited to see what the next weeks bring.

We all are different! I thank God for my husband who is an encouraging helper, and that I have a resilience that has passed many near fatal events in the past 60+ years!

[MG Community Member]

Today I had my second of four weekly Vyvgart Hytrulo infusions. This is Round TWO for me. 4weekly infusions in April, 4 weeks off in May (with all symptoms returning by mid-May).

We are going to finish this 4-week run, then take 2 weeks off and 2 on to see how it goes.

I’ll update on whether that helps.

[MG Community Member]

The Vyvgart shots are so much better than the infusions. I’m waiting for my insurance to approve the shots I can do myself. Because of the cellcept I’m doing well 4 weeks on and 4 weeks off. Before the cellcept I could never get under control. All the drugs suck but I’m doing well ,working and living my life.

[MG Community Member]

Just completed 4 weeks on, five weeks off and starting second round of self injections…am stronger, limited side effects, and can say it has helped. Still weak, with occasional swallowing and balance problems and all the horrors of Prednisone but functioning better.

[MG Community Member]

I just finished up my second cycle of Vyvgart Hytrulo and experiencing the same short term effectiveness of Hytrulo.

I’m 65 and in my fourth year since my gMG diagnosis… I’ve had multiple gMG symptoms from the beginning. I’m currently on my 4th infusion type of treatments in four years still exploring for better results.

For me, Vyvgart Hytrulo is not only lasting between the full 5 week cycles but it is not meeting the seven day weekly cycles. I’ve become weak on day six of a 7 day weekly injection cycle and nearly unconscious or at least incoherent on injection day seven twice now to where I didn’t have the strength or mind set to inject myself on two occasions of my eight total Hytrulo injections during these last two cycles. On these two particular occasions, I slept for many hours after my wife ended up giving the shot and the same incident also occurred a third time in the 5th week following the first cycle which is very scary each time, so I’m obviously not looking forward to the end of my 2nd five week cycle… We’re currently staying at our summer cabin in the mountains a fair distance from any local Hospitals that have gMG specialists or we would have rushed to a hospital in each case…

In short, my neurologists doctor was honest to admit that their clinic was too busy to give me the quality of attention and treatment needed and has referred me to the Mayo Clinic in Phoenix next week and I will share what they prescribed for me as all our bodies are different coping with gMG to a degree..

Just a little History….

I tried IVIG for my first 6 months in 2022. Worked great for gMG symptoms but couldn’t cope with the severe migraines.

Then I went to Vyvgart infusions for almost 3 years and it also worked great except it would only last 40 days in a 50 cycle and most gMG symptoms returned in those last ten days. Insurance wouldn’t allow my Neurologist to reduce cycle dates.

I then changed to ULTOMIRIS for six months which didn’t feel good in my body from the beginning, it did work on some symptoms but I mostly experienced severe respiratory and muscle decline symptoms that I still haven’t recovered from plus I experienced severe mood swings from depression to rage that are finally gone since I got off and switched to Hytrulo. Knock on wood it’s over cuz I’ve never experienced severe mood swings or depression in my life…

(Again ULTOMIRIS may be a miracle drug for most gMG patients but our bodies and severity of gMG symptoms are different and unfortunately it didn’t work for me with many disappointing set backs.)

For the Last 4 months I’ve been on Vyvgart Hytrulo, it works great in short periods but for me it does not last the full seven days in a weekly cycle nor does it last the 5 week cycles. Again our bodies and severity of gMG are different..?)

I’ve been waiting for this Mayo Clinic appointment for three months now and very hopeful they can figure my body out and what it needs and I will certainly share my progress back on this forum as I move forward with their recommended treatments.

Best Regards,

[MG Community Member]

Hello, I’m Just following up with my Vyvgart Hytrulo experience/Insurance Challenges. As mentioned in my previous post,

Hytrulo is my fourth infusion type since diagnosis 5 years ago. I’m 65 years old and initially had a rough start on Hytrulo as the insurance company BCBS continues to deny it every time I get a cycle dose behind me.

Due to fighting with insurance, it was 70 days between approvals from ULTOMIRIS to Vyvgart Hytrulo that certainly set my health back into full on gMG symptoms. The First 4- week cycle of Hytrulo was rough mostly due to the 70 day delays between the two medications. I didn’t notice much relief in the first cycle of Hytrulo, then we fought it out with the insurance for 3-more weeks before receiving the second cycle. About half way into the second cycle, my gMG symptoms began to decline rapidly and I felt much better at the end of the 2nd cycle. I went to the Mayo Clinic and they suggested a higher dose or shorter cycles to get more medication in my system in which the insurance would not approve.

Then when ordering the 3rd cycle, BCBC denied it again stating the FDA does not approve self injections in the way of Vyvgart Hytrulo type infusions… If you look it up, that is true except for the administration to gMG patients…? I am a gMG patient with at least 12 of the many Myasthenia symptoms especially respiratory, vision, swallowing etc.

In my opinion, the FDA denial is just another excuse for BCBC to deny another expensive treatment…

After another 45 days of fighting with the insurance, I was approved again with a peer to peer consultation with my doctor and an insurance advocate. I finished the last cycle a week ago and I’m just not myself with most of the gMG symptoms lingering at surface again… These insurance delays are setting my stress levels, gMG symptoms and body strength back substantially.

No surprises this week, but I’m back fighting BCBC again cause I was denied again when ordering #4 cycle of an original 12 month approval… FDA related again..!

In short, I believe Vyvgart Hytrulo works very well if I could get on a steady consecutive cycle dose in my system without insurance interference and their 30-70 day delays in between. I have turned 65 this year and I have BCBC insurance through my employer but due to the battles with my insurance, I have recently signed up for Medicare and currently looking for a good supplement Plan B,C or D plan that will cover Vyvgart Hytrulo. If anybody knows a good plan, I’d be grateful if you could pass it along…

As for the insurance coverages for gMG, We or at least I hear it in the media weekly about someone may lose their life or a loved one if they do not receive the critical treatment and medications that they desperately need due to insurance denials. Myasthenia Gravis Patients are no different.

At 65, I still want/need to work two more years and would also like to enjoy a quality of life after employment so our gMG meds are critical to us as well, similar to telling a diabetic that they are denied for insulin, gMG symptoms can also become fatal if not treated properly.

I’m not sure if anyone else is having the same challenges with gMG insurance denials that I’ve been battling but if so, it’s certainly a Topic that probably needs to be brought up in the forum on how to navigate through these denials when dealing with insurance companies and Myasthenia Gravis.

Best Regards,

Mark

[MG Community Member]

I have been getting my IVIG through Ameripharm Specialty pharmacy for the last year. Ameripharm got my infusions covered by a grant for 2025 and was just approved for 2026 as well, and guess what…they said that I would be covered if I switched to Vyvgart Hytrulo as well! This is a great specialty pharmacy. I am on Medicare and have a Plan F for A and B and my part D is through Wellcare, but I don’t really think it matters because of the grant who the Plan D is with. By the way, once I am billed in January and it is paid for by the grant, I reach my maximum out of packet for the upcoming year and no longer have to pay for any of my prescriptions!

1-877-778-0318 I would give them a call. Best customer service I have EVER encountered, bar none!

[MG Community Member]

Mark, I appreciate you sharing all of this. It sounds incredibly exhausting and discouraging to deal with the long delays, repeated denials, and how these gaps affect your gMG symptoms. Many people in rare disease communities face similar difficulties when insurance obstacles hinder access to essential treatment.

Your insights about Medicare and supplemental plans will be valuable for others facing similar challenges. -Jodi, Patient Advocate

[MG Community Member]

I have had Vyvgart (not Hytrulo) infusions for more than two years – four week of infusions followed by five weeks without them, and the results have been beyond all my expectations. Now I virtually don’t know that I have myasthenia gravis, no symptoms whatsoever, and no side effects, for the entire five weeks between the infusion cycles. I could try to prolong this interval, but do not want to push my luck.

For reference, I was diagnosed with generalized MG more than ten years ago, went through all the usual treatments which eventually ceased to work. And then I was put on Vyvgart – real miracle of science.

[MG Community Member]

It is really encouraging to hear how well this treatment has worked for you, especially after trying so many options over the years. Having stretches with no symptoms and no side effects can make such a meaningful difference in day to day life. It makes sense that you would not want to change a routine that is giving you this level of stability.

Thank you for sharing your experience here. -Jodi, Patient Advocate

[MG Community Member]

Thank you ALL for your personal experiences, thoughtful and educational replies shared with Mr. Wood. I thought Soliris would be the “cure-all” for my symptoms; sort of an ongoing vaccination. In reading your responses, I see that this could be a potentially never ending journey. This is frightening in itself. My symptoms; cannot swallow, liquids, soft foods, crunchy foods, etc… my throat simply shuts down. I have to sleep sitting up. The mucus build-up feels like I am drowning when I lie down. My speech is impacted with slurred words because of poor muscle control in my lips. I thought it was due to eating chocolate.

Insurance okayed the switch to Ultimiris and I am waiting for the paperwork to be completed to begin.

[MG Community Member]

What you are describing sounds incredibly overwhelming, especially when swallowing, speaking, and even lying down feel treacherous. Many people in this community talk about how discouraging it can feel when a treatment they hoped would solve everything turns out to be only part of the picture, so you are not alone in that reaction. As draining as it is, often treatments have to change as our bodies change.

I hope the transition to Ultomiris brings you some steadier relief. This community understands how many layers MG can add to daily life. Sending good vibes! -Jodi, Patient Advocate

[MG Community Member]

I was on a schedule of three weeks. I am now on a schedule of every two weeks I get the shot. I can tell at the end of two weeks that it is wearing off.