New MG Drug

[Nan]

Because it had been publicized as being effective for all types of MG, including seronegative, my neurologist and I had been looking forward to Vyvgart’s FDA approval. I am seronegative, and although I am currently taking prednisone, methotrexate, Mestinon, and Plex every two weeks, I am still symptomatic when the Plex wears off. We had hoped that, at the very least, Vyvgart would have freed me from having to have regular Plex treatments. Now it looks as if I will be taking more methotrexate or perhaps try yet another immunosuppressant (methotrexate is my 3rd besides prednisone), and since my antecubital veins are balking, I will probably have to have a port installed.  Since I am running out of options, I would have been thrilled to take a drug that is new on the market.

For a couple weeks, I was upset about Vyvgart not being FDA approved for SN MG. But thanks to the kindness of MG patients who have posted on support sites like this one, I have reconciled myself to the idea of having a port.

Vyvgart apparently has a different molecular target from previous MG treatments. I am looking forward to (wistfully) hearing how patients do on it.

[Amy Cessina]

Why not try tacromilus. There was just an article in it saying how well it works for MG.

[TheresaG]

Nan I too am seronegative.
my neurologist is using it already off label. It can be done.
I have been On IVIG for only two months. I’m also on prednisone and Mestinon. I am currently in the process of getting my prednisone from 20 mg down to seven or eight. So my thought was I will wait to stabilize that and then attempt the VVygard as I don’t want anything in the way to analyzing it. I do fully intend on giving it a try due to the less side effects.
you might want to ask your neurologist if he can make that happen for you if you’re still interested. The delivery system is you go once a week for an hour for the first four weeks and then to about two months later depending on how quickly it gets out of your system you’ll need to repeat it but it certainly sounds very promising. I figure that also gives my neurologist a chance to work with a number of patients to get his results.
Either way you go good luck.

[Nan]

Thank you, Theresa. It’s great to know that Vyvgart might still be another possibility for seronegatives like us. I should know in 2-3 months whether this higher dose of methotrexate (15mg./week) will allow me to discontinue the Plex.

[AnneL]

I, too, was looking forward to Vyvgart entering the market.  I patiently followed the phase 3 clinical trial, which showed excellent results with seronegative MG patients.  Thank I was shocked when the FDA approved its use in seropositive patients only.  My Neurologist was also shocked as he is treating a few seronegative MG patients and this could have been a game changer.

I was so upset that I called the Vyvgart Customer Support line and voiced to them that those of us who are seronegative, are very disappointed and feel ignored.  I explained the MG community communicates heavily on various forums and are all saying the same thing…disappointment and feel our patient population is being ignored.   The representative, who was well versed and dedicated to the Vyvgard support role, promised she would get the message to corporate.

I’m bummed, but my Neurologist told me he’d keep a close eye on results with other patients, but more importantly, it must start being approved for reimbursement by our insurance companies and Medicare part D.  Who knows how long this will take.

It may help if others start voicing disappointment directly to the company, as I have.  Squeaky wheels and all that!

[Robert Davidson]

My Neurologist told me about a relatively new drug, been out about 4 years, called SOLIRIS It’s a prescription medicine used to treat adults with generalized myasthenia gravis (gMG) who are anti-acetylcholine receptor (AChR) antibody positive. My Neurologist came close to putting me on it when I was in the hospital for 9 weeks. Unfortunately it is very expensive. he is one of only 2 doctors allowed to prescribe it to hospital patients. The cost, before insurance, is $775,000 per year and once started must be taken for life. But apparently it does work.

[Nan]

Amy, thanks for the suggestion. Tacrolimis is definitely on the short list for drugs I will try next if necessary. My weekly  methotrexate dosage has just been increased, and my neuro ordered immunoglobulin bloodwork, so we will see if IVIG or subcutaneous IG is an option rather than a port if my vein continue to be uncooperative. I am feeling optimistic.

 

 

 

[Wayne Eisen]

Hi Folks,

I’ve been waiting for Vyvgart to become available, with its FcRn receptor inhibitors.  My neurologist isn’t enthusiastic about new drugs. Also, Kaiser has its own approval process.

Wayne

 

[Kelly Criezis]

Lots of new options coming which is great!  Regarding Soliris, The drug has been around for quite some time but has only been approved for the MG indication more recently. It is quite expensive but there is patient support available through the manufacturer.

[David S]

I do not think that the VA will authorize this new drug for at least 6 months to a year.  By then we should have a pretty good idea how it works.  I’m not to excited about the side effects.

Scott

 

[Wayne Eisen]

I’m looking forward to hearing from someone who has had Vyvgart!

[Amy Cessina]

I don’t take any immunosuppressants currently. But I’ve tried to look up what it does to your body to clear all your IgGs from your blood. I couldn’t find the answer . It seemed the side effects  listed aren’t that bad.

[Bob]

I have taken Solis for 2 .5 years and it hasn’t seemed to help.  It’s better for me than IVIG which I have had alone and with Solis.  At best it’s kept me stable.   I started taking Cellcept along with all the other drugs it’s seemed to do a little.   I like most of you wish for a cure or something that will get me back to normal, but I don’t think it’s going to happen. I am fortunate that I have good insurance and wife’s a ICU/CCU Rn and both sons are in bio medicine.  They all watch me and read constantly about what will help.  It could always be worse.  As a guy once told me at least we’re above the dirt

 

 

[Tracy O’Connor-McGraw]

Has anyone started the Vyvgart infusions ? Any results ? Thanks 🌻