[Joe]

I’m seronegative and have been on ivig octagam for 6 months.mostly eye problems.it dosnt seem to help my vision much but maybe stopping me from getting worse 🤷

[Lor]

I finished my first cycle two weeks ago and have not had any symptom or side effects, however, maybe it’s too soon?. I am feeling much better and it definitely has been a game changer. I just hope it lasts in between infusions, that’s my concern. I have read that people said it does not last. I can tell you, however, after my first infusion, on day three, all my facial muscles came back which was amazing. No more slurring no more droopy eyelid and I was able to chew.

[Jodi Enders]

The following comments in these popular discussions about VYVGART contain discussion about interval time between infusions: https://myastheniagravisnews.com/forums/forums/topic/vyvgart-side-effects/ & https://myastheniagravisnews.com/forums/forums/topic/actual-results-using-vyvgart/

– Jodi, Team Member

[Tim]

While everyone is different, my Vyvgart infusions have been much more frequent. When each series of 4 infusions begin, I get one a week for 4 weeks, then it stops. At the point on the calendar where it has been at least 50 days (around 7 weeks) from the first infusion, we begin again. My illness is severe enough (and I am large enough) to warrant the maximum frequency.

Not a cure, but it does help with controlling some symptoms, while accompanying the other prescriptions (Azathioprine, Pyridostigmine, etc).

[Mark Cox]

63 years old. Been on Vyvgart for 2 1/2 years. I started out at the recommended 60 days cycles but started having reoccurring symptom’s at 40 days. Doctor moved it to 50 days between cycles. Still have symptom’s at 40 days. Insurance and FDA wont allow me less time between cycles due to the possibility of causing sores.

I love Vyvgart while it works but cant afford 10 days down time in between cycles due to my job and traveling. Currently seeking ultra solaris as another option…Just my two cents.

[Buckeye]

What do you mean by “causing sores”. I too am on the very 4 weeks.

[Debbie]

I was curious about the sores too. I also tried switching to Ultimaris. Did absolutely nothing for me at all.Best of luck. Hope it works for you.

[Debbie]

Im currently 4 on and 4 off. However Im also on my 7th month of cellcept (hoping it will kick in) Was told up to a year for it to work. And still take 5 prednisone. Ive had it rough. Just like MG affects everyone differently the medications also work differently on everyone. Most important is the trust you have in your dr to know what to do. Best of luck

[Mark Cox]

I think in short, everyone’s bodies and symptoms are different and react differently to their individual MG along with Vyvgart and all the other MG treatment-medications. Near as I can tell, I have most of the full blown side effects from my MG and have had very good luck with Vyvgart other than the 50 day cycles prescribed to me and I’m not sure about where my sores / rashes come from via MG, Vyvgart or all the other MG related medications that I’m on… From my dermatologist to my neurologist, they are only guessing what my rashes are from and giving me cortisone type creams to keep them under control… They are not bad by any means just superficial on my knee, ankle and head and just another “wack a mole” maintenance to add on to my MG care…

All I know is that I did not have sores/rashes before MG/Vyvgart and my neurologist won’t prescribe less than a 50 day Vyvgart cycle based off the recent FDA guideline’s on potentially causing sores and rashes in less than 50 day cycles along with the fact I’m already dealing with some of these conditions. I’m also on Blue Cross for two more years that are also denying me less than 50 day cycles due to additional annual cost and potential side effects not identified in the denial letter. Hopefully this will change in two years when I qualify for Medicare…

More importantly for me and the main reason for considering another MG medication is that my neurologist is seeing better results in his other patients from Ultra Solaris and the cycles are 70 – 90 days apart and that would address the reoccurring symptoms gaps I’m experiencing in the 50 day Vyvgart cycles and would also free me up substantially for my job travels and quality of life. If the rashes go away by switching them, we would know what’s been causing them.?

But I do want to make it clear that I have had a great experience with Vyvgart resolving 80- 90% of my symptoms for a decent quality of life…! And would go on to say that if it lasted the full 50 day cycles that I’m on or if I could get it approved for lesser 35 – 40 days cycles it would be near perfect for me…

My other reasons for considering anther medication related to this article is that in a 50 day cycle my MG side effects start coming back at 35–40 days and It just doesn’t last long enough to safely and competently perform my job in regards to driving, traveling and public speaking responsibilities.

If the other MG medications do not work out, I can always come back to Vyvgart and will gladly share with the forum after a few months of experimenting but I’m still convinced that our bodies are all different even though we share the same MG disease and in my opinion there is not a one size fits all MG medication or dosage… Don’t be afraid to experiment within your doctors boundaries to find what is best for for your individual body and symptoms… I’m not a doctor by any means, just sharing my personal opinions based off my personal experiences….

Best of luck to all…

I’m On Jul 10, 2024, at 4:28 PM, Bionews, Inc. <[email protected]> wrote:

[Marguerite Thibeau]

The trials were done with a 50 day cycle and approved by the FDA, so that is what Vyvgart can recommend. Some patients have gotten their doctor and insurance to try different schedules like 2 weeks on, and 2 off, or every other week to achieve fewer symptoms and no dips in scores. Ends up the same amount of meds. I was able to stop Mestinon, I still have fatigue, but no hospitalizations since I began Vyvgart. Big improvement from 3 per year! Studies are being done overseas for every other week dosing which might help some. I have seen threads by patients who had success asking for every other week. when their doctors heard from other specialist who had allowed this variation, the doctors became willing to try, Good luck!

[TheresaG]

For the last 3 cycles I am receiving 4 weeks on, 2 weeks off. They refer to it as a 32 day circle. Its been great. While remission is not a possibility with vyvgart, (need it in your system) , it’s as near to feeling pre MG as ive been in 10 years. Im seronegative.

Im also weaning off 5 mg prednisone and 4-5×60 mg. Mestinon.

It seems many cannot go the full 3 weeks post 4th infusion. For me, I crashed at 2 weeks, until next cycle. So by the time I started again it would take 3 infusions too get back to baseline. So in reality I would only get 3 good / decent weeks in a 51 day cycle .

 

[Robert]

I was 4 weeks on and 4 weeks off. My symptoms by the second week of the off period. That has happened each time. I am moving on to Ultimiris soon.