Have you heard about these latest FDA-approved MG treatments?
Have you heard of these latest FDA-approved MG treatments:
"Rituximab (Rituxan®) can treat refractory MG with anti-muscle-specific kinase (MuSK) antibodies.
Efgartigimod alfa and hyaluronidase-qvfc (Vyvgart® Hytrulo) can treat people with generalized MG (gMG) with anti-AChR antibodies.
Rozanolixizumab-noli (Rystiggo®) can treat people with generalized MG (gMG) with anti-AChR or anti-MuSK antibodies.
Zilucoplan (Zilbrysq®) is used to treat generalized myasthenia gravis (gMG) in adults who are anti-acetylcholine receptor (AChR) antibody-positive"
(https://myasthenia-gravis.com/treatment)?
Have you had a chance to talk with your doctor about any of these new treatments? Are you hopeful about the future of MG research and treatment with all these new options becoming available?
Jodi, Team Member
Yes, I have heard about most of the treatments and indeed have been on some of them. I have been on cellcept, rutuxan, predisone, mesinon and IVIG. Today, I'm on only misinon and IVIG. The cellcept and rutuxan destroyed my immune system and I got a horrible fungal infection. Three months in hospital with IV antifungals and only mestinon and IVIG for MG, Still on itrasconazole for the fungal infection and likely on it for the rest of my life (per the ID doctor) and am continuing on mestinon and IVIG. Mestinon 60mg bid to tid and IVIG every 4 weeks. Seems to be stable at this time.
My doc put me on vyvgart when I could not handle prednosone. Am also on mycophenolate and in 6 months will stop the vyvgart. Am being tapered off the prednosone, down to 5 mg in another week, then for 4 weeks and finally done with that miserable stuff. hoping my dry eye will go away with the prednosone. read where prednosone can cause dry eye.
Hi Linda. Thanks for your note. I just want to be sure I understand. Are you taking Vyvgaart in addition to Immuran and Mestinon? I do exactly the same regimen except no Vyvgaart. Is the added benefit just more energy or is there more symptom relief as well? Thanks.
Hi, I am new to this site. I was officially diagnosed with MG in March 2012. I have the generalized muscle weakness. Thymus is non_cancerous, so no thymectomy. No eye drooping. Just the all over weakness. I have been on different medications over the years.
I am currently taking Immuran 150mg twice daily. Mestinon 1/4 tab 4 times daily & extra tab if needed. The dose is a little strange, but with any higher doses I get wicked hot flashes & sweat like I have been running miles & it's Not a good look! Lol.
Did IVIG infusions for a few years, minimal success.
Started Vyvgaart infusions about 2 yrs ago & my schedule that seems to work for me is doing the infusion 1 day a week for 4 weeks than off for 4-5 weeks than restart. I seem to gain more energy & keep it longer with this schedule. I don't have the energy drops i used to get when the infusions were farther apart.
The side effects for me were hair thinning, Terrible migraine 2 days after. 5-6 lbs weight gain. I think that might be, because I had ore energy & would snack, since i wasn't napping as much.
I have to say when I was first diagnosed in 2012, there was a lot less info on MG. There has been a lot of progress since then. I live in SD & there isn't a lot of info available on MG at neuro offices.
Hopefully with more groups & education online, people will be more familiar with this illness.
Sorry I answered the question with way more content.
I am glad for the support here,
Linda
