MemberAugust 4, 2022 at 5:16 pm
Hello to all,
I have just been told that I will start getting Vyvgart. 1X/wk for 4 wks then a 2 month gap that weekly again. Recently the 2-day IVIG/mo + mestinon + prednisone are giving me diminished results. Main problem is swallowing food and sinus issues.
1. Does this mean I stop the IVIG treatments? How about the other drugs?
Hopeful for an improvement. Any input would be appreciated.
MemberAugust 4, 2022 at 6:46 pm
Edward as I just posted to Claire. Instructions note you are eligible for your next infusion 52, perhaps 55 days post the first infusion dat of the previous cycle.
if you calculate that is every other month roughly.
if your medical team says you have to wait 8 weeks after your last infusion, call them as soon as your improvement starts to decline as this means you are ready to get more.
It may have been mis communicated to you. I would get confirmation. Just a thought.
im now in cycle 3 mid cycle. 10 days after my first infusion cycle, I was to my old symptoms. SOB, sleeping, muscle fatigue etc. My ocular is never gone but improves on VyVgart.
hope this is helpful.
MemberAugust 5, 2022 at 7:22 pm
Thank you for that clarification. Right now I am going through the process of getting set up with the home infusion company and making sure that my insurance covers the cost. I used this home care company during the pandemic and they were less than perfect.
MemberDecember 20, 2022 at 3:59 am
I was on IVIG every 3 weeks for the past 10 months. When I got Vyvguard approval, I had to stop IVIG for 3-4 weeks before getting the first dose of Vyvguard. I believe it is due to the mechanism of action (MOA) with the Vyvguard versus IVIG. With IVIG you are getting infused with IgG antibodies to boost immune function, whereas with Vyvguard, the infusion consists of IgG1 antibody fragment that binds to the Fc receptor (FcRn) resulting in the reduction of circulating IgG levels and AChR antibody levels so essentially it cancels out the benefit of IVIG. Hope this helps and you feel better!
MemberJanuary 2, 2023 at 12:48 am
I was getting two days of IVIG monthly. They were becoming less and less effective. Vivgart is a significant improvement overall. So far only three of us at the clinic have been approved for vivgart. I believe that there will be many more.
MemberJanuary 2, 2023 at 5:10 am
That’s great to hear Edward. Vyvgart has helped me a lot and for the first time in 2 years, I am able to walk better and even do some light exercise which had to be put on hold due to risk of falling and lack of balance.
MemberAugust 4, 2022 at 5:29 pm
I’m not a doctor but you won’t have to have IVIG when taking Vyvgart. I know I didn’t. Still taking prednisone though that is a process of reducing the amount. Went from 30mg at the time of the infusion down to 15mg currently. Mestinon I am still taking at the full amount. Good luck! If it is like with me and others here, it will help you!
MemberAugust 4, 2022 at 6:51 pm
Mark we seem to concur on our experience using mestinon and prednisone with VyVgart.
im down to 7 mg, slow go, but neuro figures I’ll remain on 5 mg which is a dose that supposedly does not damage the body.
cycle 3 infusion 3 Friday. Live it.
and for anyone reading. I’ve been told, we all will differ as any treatment and it does not cure, it improves.
My QOL test has gone from 11/13 to 3.5/5 my days still vary and I can still burn myself out and need a day to chill and perhaps nap. But I’m in retirement so that is fair, right?
MemberAugust 5, 2022 at 1:01 am
TheresaG you are correct! That is the advantage of being retired. Me too as of last October. Good thing because I had an episode in February which brought me ultimately to Vyvgart. I too am still having double vision still which comes and goes all day partially based on how active I am, how much sleep I did not get and between the mestinon pills.
MemberDecember 15, 2022 at 7:13 pm
Wonder how all of you Vyvgart folks age doing.
I am a VA patient and it appears that the process is working towards allowing me this treatment. I am not sure that I want to take it.
Currently taking Mestinon – 420mg/day, Prednisdone – 10mg/day, Imuran – 150mg/day and monthly IVIGs.
I know I will stop IVIG treatments, but what about the other meds.
How are you feeling, I have not seen many “Long Term” results.
MemberDecember 20, 2022 at 3:34 am
I think it is too soon for long term results as Vyvguard was only approved a year ago. I started Vyvguard infusions 3 weeks ago and after one infusion, I noticed an improvement with my legs and movement. I also don’t take the mestinon as I used to (60mg 4 times daily), coz it used to be every 3-4 hours, my legs would get heavy, I would start to stumble, not be able to take stairs, or get up from a chair without holding onto something, but since starting Vyvguard, my mobility and ease of motion has improved and I don’t remember to take mestinon, unless I’ve had a long day and then my legs get really tired so I take it as needed. For me, Vyvguard has been a miracle to manage MG and I pray there are no long term negative effects.
MemberApril 17, 2023 at 8:14 am
Hi there, my hubby Jeff is the MG patient, also a Veteran. The VA here in Vegas is dragging on approval for Vyvgart it’s been 3 years of seeing double vision, took almost 2 years to diagnose. He lost his voice for about 2 years and with lots of Faith, Prayers his voice came back. We are with hope the VA will approve it soon, I have a diet to help with swallowing so he doesn’t choke and he sleeps so much. The Lord helps me every day to take care of him. He can have good days but then it takes as many as 3 for him to get back ok. Thank You all for being here.
MemberDecember 20, 2022 at 3:18 am
It is good to read many of the comments and reactions to Vyvguard. Some are doing better while others are not or still waiting to see how it will impact their health, hopefully for the better.
I am seronegative AchR and diagnosed with MG and a year ago, I couldn’t walk properly, had balance issues and was tripping over my legs, and almost fell a few times, I had difficulty swallowing and had shortness of breath all the time. I had been active and athletic playing tennis 2-3 times a week and walk very briskly, so MG really affected me and I had to give up active sports to avoid falling and injury about 2 years ago. My neurologist started me on IVIG as I’m allergic to steroids every 3 weeks and 60mg mestinon 4 times daily.
Then I saw another neurologist who recommended Vyvguard and tried for the authorization despite my seronegative and miraculously it was approved. This was a gamechanger for me. Since starting the first Vyvguard infusion, I noticed an improvement within days! I am on my 3rd infusion now having stopped the IVIG some time ago after a week, I was able to go up and down the stairs slowly, I’m walking with more ease, my balance is improved and thankfully my eyelids don’t appear as droopy. I really hope Vyvguard gets approved for more of us with seronegative MG!
MemberDecember 20, 2022 at 8:39 pm
Thank you Renna for your responses.
Looks like I may start late January or early Feb ’23.
I am glad that it is working for you.
I still don’t know if I want to take it. I am hopeful.
MemberDecember 29, 2022 at 12:39 am
Are you seropositive or seronegative? If you don’t mind my asking, why are you hesitating to take it, if it’s approved for you?
My hope is it gets approved for seronegative MGers, as I feel much better since my vyvgart infusions began and like my old, healthy self, which is giving me so much hope to keep improving. Wishing you all the best, whatever path you decide to take.
MemberDecember 29, 2022 at 5:39 pm
Hi Renna –
I am Positive.
I don’t know why I am hesitating about this treatment. Trying to find out more about it. I am being enrolled in the Path process. We shall see what I find there.
I do not like the idea of one infusion every week for four weeks. I have needle anxiety. Once a month for IVIGs is alot for me. With Vyvgart, I am looking at 4 shots every 50 to 70 days. ARGH.
Looks like I will get it though. The Debakey VA hospital, here in Houston, has two candidates. I am one of them. The Infusion Clinic has been trained.
MemberDecember 31, 2022 at 6:18 am
What is the Path process? Never heard of it. I, too, am very needle phobic, but after a year of IVIG every 3 weeks and taking up the whole day Vyvgart seems a little easier somehow for me. It’s once weekly for 4 weeks, but my infusions are usually done within 4 hours at most and somehow this has been an immediate improvement post infusion which I’m praying will last a while.
Good luck to you whatever you decide to do! Keep me posted and a happy New Year as well.
MemberDecember 31, 2022 at 1:43 pm
I might have used the wrong words –
“My VYVGART Path is <b>a Patient Support Program that provides personalized support to you and your patients during their VYVGART treatment journey</b>. The committed team at My VYVGART Path offers: Patient-specific benefit verifications, including confirming out of pocket costs and prior authorization requirements.”
If you are using Vyvgart you probably went through it.
I remain hopeful.
Have a great 2023.
MemberDecember 31, 2022 at 5:37 pm
Thank you for explaining that Scott! This patient support program sounds very good and I hope you get the information you need to do what’s best for your health journey.
In my case, my neurologist requested the Vyvgart and went through the insurance route then I got my OOPs sent over. Hope 2023 offers us better days with good health.
MemberDecember 31, 2022 at 7:17 pm
To all the people that have positive results with the Vyvgart treatments I envy you. I had my 12th infusion, third regiment of four treatments and have seen no positive results. I was diagnosed seven years ago. I tested positive for all 3 markers on my blood test. I wish all good luck and a happy new year.
MemberJanuary 1, 2023 at 10:47 pm
Happy New Year James! Have you also tried IVIG? Since Vyvgart didn’t work for you despite having the biomarkers, and you are seropositive, I’m wondering what other options your HCP might have suggested.
MemberJanuary 2, 2023 at 4:29 pm
Happy New Year to you also. I have tried IVIG, twice. I am also on Cellcept and Mestinon. I have also been on and off prednisone.
MemberJanuary 1, 2023 at 1:20 pm
Hi James –
Thank you for your response.
So, what is your path forward?
MemberJanuary 1, 2023 at 10:32 pm
MemberJanuary 1, 2023 at 4:25 pm
<p style=”text-align: center;”>Just finished my second cycle of vivgart infusions. Being treated at the hospital. Much better than home infusions. Takes about three hours from start to finish. Better results than IVIG but different. Less positive results with vision. After 4-5 weeks positive effects declined.</p>
MemberJanuary 2, 2023 at 3:34 pm
Such a wide variety of results…..
Guess if it doesn’t improve my situation, I’ll just keep doing what I am doing now…not much.
Hope everyone has a great 2023. 🙂
MemberMarch 26, 2023 at 5:59 pm
Hello everyone. Has anyone had to stop Vyvgart and go back to IVIG ? I’m curious how long you have to wait in between. I did not have a positive experience with Vyvgart. Allergic reaction and full-body tingling with pretty bad muscle pain. Muscle weakness is worse than before I started. I had a total of 4 infusions -1 cycle.
MemberApril 14, 2023 at 10:15 am
I’m gonna start this drug, Vyvgart, later this month. My question, will Medicare pay 80% of the cost as I understand this relatively new drug cost $6,500+ and I’m retired living on a fixed income. Any information, greatly appreciated!
MemberApril 14, 2023 at 4:01 pm
I am now almost a year on Vyvgart, I am seronegative.
it has taken some adjustment to the normal dosing, but overall, I will say I am a lot getter today than a year ago.
I continue wit 7 mg prednisone and 4x60mg mestinon.
there are times I have some SOB, fatigue, weakness and the eye droop and double vision never goes away. The part of the cycle I have to wait 3 weeks is the worst but I get right back up when the infusions begin again.
‘Always remembering, this is not a cure, but a treatment and so it has its ups and downs as well.
it is a great treatment for me. I am in the habit of being cautious on schedule and commitments but that is okay, I still do more than many my age.
MemberApril 14, 2023 at 9:28 pm
Yay! I had my first Vyvgart infusion yesterday. I am seronegative, 11 on my last ADL questionnaire. I am hopeful. Thanks everyone, especially the seronegatives, for the Vyvgart information you have posted in this thread. It has been helpful for me.
MemberJune 8, 2023 at 10:53 am
Looks like I will be starting Vyvgart mid July. Would love to hear from from you folks currently using vyvgart and how it is effecting you.
MemberJune 23, 2023 at 11:58 am
Hope all are doing well.
After meeting with my Neuro this week, I have decided to hold off on the Vyvgart treatment for a while. One of my, and my Infusion Nurses concern is, how quickly can one get the next treatment cycle when the symptoms recur. The infusion center at Debakey is quite full. It was approved by the Debakey VA Pharmacy recently so it is available to me.
It appears that it is effective in about 5 out of 8 patients. Not bad odds, but for me, the 4 week infusion cycle far out ways the 50 to 70 days between treatments. My Neuro concurs.
BTW – While talking to the Vyvgart Nurse last week she advised that they are working on a one shot treatment. If it shows efficacy, I asked her to please put my name on the top of the list.
MemberJune 23, 2023 at 2:37 pm
Actually I have been on Vyvgart for over a year now and having great results from it. However I now have to go from every 50 days down to every 42 days from 1st trtmnt to 1st trtmnt. However I look forward to the next round to start because I know that I will be symptom free. Vyvgart is a miracle drug for me.
MemberJune 23, 2023 at 5:57 pm
Thanks! Have thought of a Thymectomy?
MemberJune 28, 2023 at 1:00 pm
I was diagnosed in late 2019 with gMG and am AChR positive. I started taking Vyvgart in November 2022 along with my previous Methotrexate once per week.
I’ve been on Vyvgart for 8 months. I’m now on Cycle 3 Week 3 of Vyvgart infusion. My average time between Cycles is 12 weeks. My MG ADL scores go from 7 before infusion cycle begins and ends up at a 3 on the MG ADL.
My most important improvement is in my muscles in my legs are stronger and don’t hurt as much, longer stamina, and my breathing is much more efficient and easy.
I’m at a very good place having my Vyvgart infusion every 13 weeks apart.
MemberJuly 17, 2023 at 1:24 pm
I was diagnosed as positive in December 2022 after a lengthy bout of misdiagnoses and ignorance of the (mostly mild) symptoms. I received my first Vyvgart infusion last week and have experienced remarkable results. I was reluctant to admit there was any impact the day after my treatment but by the second day the impact was obvious to those around me. I was essentially symptom-free: no eye-drooping, no slurring, reduced weakness and instability. I am now four days beyond the treatment and have noticed that mild symptoms (eye-droop and double vision) reappeared prior to my morning medication. I am currently on Mestinon, 20mg Prednisone and CellCept. My neurologist is weaning me off the Prednisone (down to 17.5 mg in two weeks) as the CellCept takes effect. No side effects from the Vyvgart treatment (a mild headache the first afternoon but that could just have been stress-related). Looking forward to this week’s second infusion to see if the results continue to improve.
MemberJuly 19, 2023 at 2:44 pm
I just completed my third dose of first round. I was hopeful since many results posted are positive. Unfortunately I haven’t seen any changes except for the worse. After first dose had minor headache and nasal congestion. Nothing that couldn’t be easily tolerated. I was also extremely tired but attributed that to just being a bad day. After second treatment same issues and now after the third it is worse, especially the fatigue. I will finish the round but unless I see some changes for the better will probably stop at that. I have already tried IVIG as well as plasmapheresis without success. Glad it’s working for many at least.
MemberJuly 19, 2023 at 3:03 pm
Michael, I didn’t see any great improvement until a few days after the fourth infusion of my first round — maybe it will be the same for you. However, I am seronegative and was responsive to plasmapheresis. I am hoping that you are just having a slow response.
MemberJuly 20, 2023 at 12:16 pm
That’s encouraging, it seems there is still hope. Once first round finished they can do another for awhile but so there’s time to decide.
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