Myasthenia Gravis News Forums Forums Healthcare and Treatments New approved MG treatment for gMG – Vyvgart Hytrulo

  • Marguerite Thibeau

    June 23, 2023 at 10:09 pm

    I was very excited about the idea of  a subQ Vyvgart, But I’m not as comfortable with the  additional drugs yet. I have MCAS and Chemical allergies so I will watch for a while. I had hoped to get the injection at a local Neurologist, saving 3 hours of driving and 2 hours in the infusion center. Also sparing my veins.

    • Joe

      September 1, 2023 at 6:20 pm

      Anyone here of octagam? I’m mg negative and my first infusion.

  • Angel

    June 25, 2023 at 9:16 am

    Thanks Jodi

    I will contact my doctor to find out.

    Please keep me posted

    Thanks again


    • John

      September 7, 2023 at 10:09 am

      My Neurologist is putting in the order right now. I did ask my Vyvgart Hytrulo case officer to have it done with my own Doctor(15 mins away, instead of 45 mins way at the infusion center) or indeed have it done at my own home. No go with my own Doctor(no doubt a money thing) and would have to get insurance to approve it being administered at home.

      The whole point of this is the fact that they always have a hard time sticking me, so a simple injection is wonderful not to mention the time saved. I gave my wife Forteo injections for one year, and you would have thought they could have got this organized by now, and yet It’s still all about who gets a slice of the green stuff in the end.

      Regardless, this will be my third series of Vyvgart and when I start, and finish will let others know how it went, but more importantly, how I did and the hopeful and continued improvement with my health would be nice.🥂

  • Debbie sandwra

    September 8, 2023 at 3:30 pm

    Vyvgart infusions didn’t work for me for very long. The 3-4 weeks off is the killer. Is it just me or do another people have a problem with the time off as well. And insurance won’t cover weekly no time off.

  • Mark Palmer

    September 17, 2023 at 4:30 pm

    I’ve had two cycles of Vyvgard via IV. My results have been very good and have started reducing Prednisone. My next cycle will be Hytrulo.

    I’ve gone from 8 hours of IVIG given over two consecutive days, to 90 seconds/week for each of 4 consecutive weeks. Amazing.

  • Bambilin

    December 30, 2023 at 8:02 pm

    I finished 4 vyvgart infusions with no noticeable improvement. Should I take the next 4 after my 4 weeks off?

    • JustDeb57

      January 17, 2024 at 6:32 pm

      That’s a question to ask your doc. O certainly would be questioning.

  • Tim

    January 11, 2024 at 11:11 am

    I like the idea of the Sub-q meds, but I think I’ll hold until it’s been in circulation for a while. I have been taking the Vivgart by infusion the past 2 years (4 weeks on, 3 week+ off, repeat). This is paired with Pyridostigmine and Azathioprine as daily oral meds. This seems to sustain me. I’m not getting worse, but halfway through the off-cycle I begin to falter again; halfway through the Vivgart I’m feeling a bit better. BTW: following a MG crisis 2 and a half years ago I was doing IVIG. It helped me through the crisis but little thereafter. The Vivgart is what made the difference for me.

    Until something truly revolutionary is developed, my fear is that I’m (we’re) stuck with what we have. BUT, I am truly thankful for the treatments we do have. Without them I don’t know where I’d be.

  • Ann Wolovits

    January 12, 2024 at 10:44 pm

    After 6 (6×4) Vyvgart treatments that helped with some symptoms decided to try sub inject / bad mistake for me

    Severe blown up rash on my stomach

    Couldn’t continue treatments – set me back – moving to Ultomiris after having vaccines for meningitis

  • Jools

    February 8, 2024 at 9:53 am

    Hi jodi….are you in the USA..? I’m very interested in being considered for the new treatment but I’m in the UK. Has any one in the UK started this yet or is it still pending more approvals. I’d love to hear from UK members on that but also a bit more from you Jodi on your feelings about it. I’m 44 years with Generalised MG. I got it at 14 yrs old and I’m now 59. It’s only the last 3 year that I’m having weird flare-ups that’s affecting my speech/swallowing and facial movements, so this is very new to me. My Neurology team are also considering FND which has just added fuel to the fire. I’m not 3v3n sure what’s going on now but I’ve tried everything. Mestinon, prednisolone, ivig etc and are now starting Rituximab…..I just feel that I’m lagging behind with more modern treatment options and that I’m also just a guinea pig for tick boxes here in the UK. Once FND is mentioned, it just tips the boat over for specialists to say “we don’t know” and ship you off with a head full of fear and worry. I’ve looked after myself and reasonably controlled my MG for 45 years but this last 3 years are a mystery to me as to why now itsxall gone skew. ?? Ans FND never got a look in before. Yes, I’m very frustrated, fearful and mentally exhausted which dosnt help eh. Anyone got any thoughts. Much appreciated. Jools UK

Log in to reply.