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Not a candidate for Vyvgart
My neurologist advised me that I was not a candidate for the new treatment Vyvgart. He said that I would have to get IVIG or Plasmapheresis. I have taken IVIG in the past, so I will go with taking IVIG.
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34 Replies
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Hi I am curious if you could share while you were not a candidate. This would be interesting to know in case my husband might need it in the future. Thanks and good luck!
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I am currently on Vyvgart, and doing great. My doctor said that patients that have a positive reaction to Plasmapherisis tend to do well on Vyvgart. This has been true for me. I too am curious why he felt it’s not a good match.
Insurances can play a role in what Meds we can access. Some want other drugs tried before certain treatments. I had done great on Soliris for several years, then it wasn’t enough. Vyvgart wasn’t approved yet, then there were no infusion centers certified for it. I’m infusing at home and loving that it’s only 2 hours for a month, then nothing until I need another boost in a month or two. Traveling to an infusion center added 4-6 hours to the actual infusion time, so I’m feeling very spoiled.
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I am waiting for an approval for vivgart. The IVIGS 2-days a month have been less and less effective. Swallowing food is a big problem now How long does it take to get approved?
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I also want to be able to get vivgart. I’m having IVIG monthly at 2 days. I haven’t asked my doctor yet about yet.
I’ve had MG sense 1992 diagnosed in 1994. Lots of IVIG, Plasma Exchange, Prednisone up to 80mg a day, I am now 70 years old and still looking for things to keep me going. The last 2 years have been the worst for me. I am moving now, and I can’t help my workers do anything at all, I live on the couch and in the Bed, unless I absolutely have to go.
I have good days that I feel good and do a little more. If I know I’m going some, were I rest the day before.
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<p style=”text-align: left;”>I understand to be a candidate for Vyvgart, you must be Seropositive. I am Seronegative.</p>
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I hope the FDA is working on allowing us Seronegative patients access to the new drugs. It is not fair that we have all the same symptoms. I am getting off long term {1 yr} high dose,[100mg now down to every other day 20mg] Prednisone, Mestinon doesn’t work for me any more, on 2500 mg Cellcept daily. I have Ptosis, blurry vision later in the day and muscle weakness after short term activity. It appears after a year, the Cellcept isn’t helping me much.
Please, we seronegative patients need help too!
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a clinical trial was underway for sero negative. it may have already concluded so if the results were positive, it could be available soon.
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Oh I see thank you so much for the clarification and bless you I hope you find some relief
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My husband is seronegative and is on Vyvgart. He is on the 4th infusion with no change. I hope if you get approved for it that it works on you.
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What was the specific reason you were given that you were not a candidate? I am using it and it is a miracle drug for me. However, that’s why they call MG the “Snowflake Disease”. You never know.
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I am Seronegative. My symptoms are the same as yours, but you are probably Seropositive.
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I am assuming my team will probably put me on IVIG treatments too. Being Seronegative throws a wrench into most common treatments for MG
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Yes, seronegative MG is challenging. I’m so tired of all these drugs that could be helpful but all you get is “sorry not for you cause your seronegative”. When will they realise it’s not really negative it’s just the tests are not picking up or it’s a different antibody. It’s very frustrating that there’s meds that can help you but …you can’t get them. Can’t take Prednisone, bad side effects athioprine did nothing. Mestinon timespan and multiple regular doses throughout the day is only partly effective. I know there’s more…but I’m not allowed to have the treatments that might help. Fatigue is the worst. I work full time and I crash in the afternoon. The depression is getting to me, it’s fed by the simple facts that I can’t get treatment that would help. So, at 60 yrs old. I’m in pretty good shape otherwise. But here I sit waiting…
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Yes, my neurologist said he went all the back to when I was first diagnosed with Myasthenia Gravis. I am Seronegative, not Seropositive. For now I chose to have IVIG, because this double vision comes to me frequent.
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I am seronegative and I just finished my first cycle of vyvgart yesterday. I have tried ivig and plasmapheresis and have had serious anaphylactic reactions to both. I have been in a cycle of flare ups/exacerbation/crisis since my diagnosis in March of 2019. I have been intubated eight times!!! I have been on high doses of prednisone since the beginning along with Azathioprine. I am truly amazed how much better I am feeling. Our goal (my doctor and I) is to get a month maybe a month and a half before having to do another 4 infusion cycle. ( I have tried both Mestonin and cellcept and my body couldn’t handle either. ). We did have to jump through hoops with my insurance company, but in the end the did approve it. Hopefully my body will continue to accept it and respond well to it. Hang in there my seronegative friends!!! Hopefully soon it will be approved for us!
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Wow, I am so happy you are doing well on Vvgart. There is hope for us Seronegative people.
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Thank you! Yes there is hope!!! Hopefully it will be available to all seronegative mg patients that are struggling with lack of positive treatments!
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Not exactly the topic but…i was on 60 MG of Prednisone and i take a 60 MG Mestinone every 4 hours. Developed diverticulitis and Dr needed to get me off the steroids so went to an IVIG every three weeks. I was able to get of Prednisone fully adter 4 months. My insurance has denied every infusion and the bills are stacking up. Our Dr has sent in appeals to no avail. I have a good insurance but they say there are other methods to treat my disease. Any suggestions would be appreciated.
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Have you tried cellcept? Azathioprine? Low doses of prednisone? Has your insurance company made any suggestions, since they are denying your infusions? Are you seronpositive or seronegative?
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Thank you, so simple that i have not challeged the insurance to provide an option. Cellcept and Azathioprine arent good options due to my diverticulitis and my high risk for infection. Most other IV treatments seem to be more than my IVIG so its surprising they are being so tough.
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I’m very surprised they have denied the ivig…usually that’s the go to when oral medications are not an option. I would reach out and see what their “other options” are. Fingers crossed that you and your doctor find something that works…I understand your frustrations. Hang in there.
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I am seronegative. My doctor had to include a diagnosis of CIDP or else my IVIG would not have been approved either. I’m sure some of us seronegative patients will tell you that you need to find a doctor that is “creative” if you understand what I’m trying to say. Most doctors know how to play the insurance game. You may want to find another. Be well
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off topic for your off topic. i had diverticulitis prior to MG and had a very terrible time with mestinon. it seemed to aggravate it to the n-th degree, worse than any flairs i had with diverticulitis before, the pain was unbearable. I had no problem with prednisone and diverticulitis. i was never so happy as when i stopped taking mestinon.
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I too had diverticulitis problem flared up several times for more than a year. Doc debated if I needed surgery. My wife was on an antibiotic and pharmacist gave her a good quality probiotic that you have to refrigerate …it has 13 different active cultures. She had some left and I thought I would try. Within a week of starting them I felt better…very little stomach pain. Went away and that has been over a year with not a single problem. Not sure that was the reason but I thought why mess with a good thing so have stayed on them every day. I had been eating a good yogurt but it only had 6 cultures…. so maybe there was a different one in the 13 that I needed? Not a believer in voodo meds…but something turned my diverticulitis around…
Now…if just could get my mg to do that….
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I do not know what makes one “Eligible” – I’m seropositive.
I was asked today, by my VA Nero, if I might be interested in Vyvgart. I currently am taking monthly one day IVIGs every 30 days. Evidently it has been put on the Pharmacy “Shelf” and is being used on a limited basis.
I understood one shot a week for 4 weeks then 1 month, +/-, shot free.
Not sure that the treatment is worth the effort for me. I will keep an eye on this treatment and continue with the IVIGs for the next few months.
Scott
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I can only say it has been a life changer for me.
If you are able to get it, often not easy due to insurance, it is worth the try.‘do be forewarned, it may nit be an immediate gratification. It took me 3-4 infusions for a major impact. Then the following cycles for me needed to be the 50 days post 1st I fusion of last cycle.
you might have to give it a couple cycles, remember they are learning what works in the real world in the dosing.
im working toward every other week once the baseline has been achieved which I hope to be this one, cycle 5.
Good luck.
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My Dr suggests that I switch to Vyvgart from Azathioprine. (2, 50 mg tablets per day) because the Azathioprine has made me anemic. Could anyone on Vyvgart share what the treatment has done to your red blood cell counts, hemoglobin, corpuscle size etc?
Thanks
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I have not seen any change in CBC results and I have these tests every month to monitor for changes.
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My Dr suggests that I switch to Vyvgart from Azathioprine. (2, 50 mg tablets per day) because the Azathioprine has made me anemic. Could anyone on Vyvgart share what the treatment has done to your red blood cell counts, hemoglobin, corpuscle size etc?
Thanks
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Hey Loren! Try posting this as a new topic for everyone to see. I am sure more people will see it. Let me know if you need help figuring out how to do this 🙂
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I am a Vietnam vet, diagnosed in 2019 with gMG and undergoing IVIG treatments monthly as well as Mestinon, Imuran and Prednisdone daily.
I was recently told by my Neuo, that the VA Pharmacy at Debakey VA Hospital, would not allow me to start the Vyvgart treatment because I am currently undergoing IVIG treatments.
Clearly there is a disconnect here. One would stop IVIG and Plex while undergoing Vyvgart treatment. (Not sure about my other meds yet.) Evidently no one told the Pharmacy how this FDA approved treatment is actually used.
Spent 45 minutes on the phone today with the Vyvgart people. Finally after three phone transfers, I got to a guy that Confirmed it was currently in use in the VA hospitals – Atlanta specifically. He has found that many IV provider/clinics, do not understand how to use the drug and therefore say that it is not available. So the Vyvgart people are trying to educate the users, the IV Clinics and Neuros, what this stuff is and how to use it. I would hate to think that the clinics are not interested in this product because they are happily full with products they know.
Anyway, they, the Vyvgart people, will contact the Debakey VA Hospital and educate them. Maybe????
We shall see.
Scott
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I’m stable on Cellcept so my neurologist has taken a wait and see approach on the newer treatment options until my next annual checkup. With so many options in the pipeline, I’m hoping that less invasive delivery methods like oral or injection will be further developed in the meantime. I appreciate the early adopters who are trail blazing with these new treatments.
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My neurologist said I’m not sick enough.
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I’m sorry so many can’t try out Vyvgart. I am seronegative and on Medicare (not Medicare Advantage). When my neurologist said I needed it and that all cheaper meds that I could have had been tried, I was approved for it in 10 days. I have had two full cycles now. The first one began on June 21, and the second started on September 5. In each case, I saw improvement with each infusion. It worked even better during the second cycle in that the improvement is lasting longer at least so far.
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