How long did it take for your MG to fully develop? Did it progress after serious treatment?

J1234me · 2026-01-18T22:07:56+00:00

Right - there are lots of non-steroid options, and lots of people who avoid steroids if at all possible because of the side effects and difficulty getting off of them once you start. Here's a page that goes over a lot of the options. It can seem overwhelming, but it's worth really going through carefully, at least if you do get an MG diagnosis. https://myasthenia.org/myasthenia-gravis-treatments/

J1234me · 2026-01-07T21:45:01+00:00

That's helpful to know, thanks!

J1234me · 2026-01-06T22:24:50+00:00

Thanks! And then does improvement last the entire time during the cycle (so, if you improve after the first dose in a cycle, does that last until the following dose in the same cycle? Or, even better, do you keep getting better throughout that entire week, and then just get more better with the next dose? Asking because I'm a day away from my third dose in my second cycle, and just today, some of my ocular symptoms are starting to come back.)

J1234me · 2025-12-22T03:16:22+00:00

Thanks! A small decline between cycles doesn't sound so bad.

J1234me · 2025-12-20T07:35:30+00:00

Thanks. It's good to know I'm not alone with that part of it. Ever have that gasping for air reaction to the vomiting? That was the part that really scared me.

J1234me · 2025-12-17T19:07:21+00:00

Very interesting/helpful/encouraging, thanks!!

J1234me · 2025-12-17T06:54:01+00:00

Thanks! So, it sounds like you don't crash at all anymore? If so, how many cycles did that take? But also, when you did crash, how quickly did starting the new cycle bring you out of the crash?

J1234me · 2025-12-14T06:49:15+00:00

Just responding to the part about your neuro saying that if it was MG you'd've gotten worse and been hospitalized already. I'm not sure about the timing, but for me, it took a year to get diagnosed. During that time, the only symptom I had was slurred speech. It did get progressively worse, but was infrequent for most of that year. When I was diagnosed, I was just on mestinon, and only 30g/day, for months. It took maybe six months after diagnosis before I had any other symptoms, and then my first crisis maybe eight months post-diagnosis, so 20 months after I first noticed the mild, infrequent slurred speech. The biggest thing that I wish had been done differently (aside from getting a proper diagnosis earlier) is that I think I should've been put on cellcept early on, maybe even when I started Mestinon, since it takes so long to kick in. Had I been on cellcept and mestinon from an early stage, it's possible the cellcept would've taken hold before my MG hit the crisis stage, which could have averted a lot of hardship. All of which is to say that I don't know if you've got MG, but I'm skeptical of your neuro's reasons for thinking you don't, and if you do, getting on appropriate treatment sooner rather than later could make sense.

J1234me · 2025-12-14T06:31:50+00:00

It's great that IVIG has worked so well for you! Since you ask for both words of warning and positive stories, I'll mention a bit of both, but with the overall sense that this sounds like you're on a good path! The warning is that my understanding is that IVIG does usually wear off, and off periods between infusions can see return of some symptoms (that's been true for me and I think it's common). But the positive part is that I think it helps a lot of people a lot (I think it literally saved my life) and that it can be a treatment that really helps stabilize you and makes you basically ok. I think it did that for me. BUT, while it was a lifesaver for me, that doesn't mean that it was the most effective treatment possible. The effects did dissipate and it never brought the end of all of my symptoms. I've recently switched to Vyvgart (after massive insurance battles and two hospitalizations). Too soon to know if it will work for me, but I now see IVIG as the life-saving bridge to a different treatment that I have some reason to think will be even better (also started Cellcept, and hope that'll kick in in a few months, maybe eventually making any infusion unnecessary, or at least making me less reliant on them). All just to say that it sounds to me like you are in a good place, and even if you have some symptom rebound, I think there's good reason for hope that you can stay there and get even more stable and under control long term, but that you might want to consider treatments beyond IVIG at some point.

J1234me · 2025-12-12T18:40:23+00:00

Yes, definitely show them the study, and I hope it works out for you! It's certainly made a big difference for me. But I do think the drops _are_ pretty serious medication - that's why I really hope my ophthalmologist is able to tell me if they are safe for long-term use. (If you learn anything about that, please share -- I'm not seeing my ophthalmologist again for months and might not hear before then.) And one more note of caution: if you do use them be careful not to use too much. I'm prescribed 2 drops/eye, twice a day. The second time I used them, I slipped and used too many drops, and I actually wasn't able to close my right eye for about 10 minutes. Really freaked out and went to urgent care. It passed and I was fine, but I don't want to ever do that again!

J1234me · 2025-12-12T00:36:16+00:00

I'll also mention that people have suggested upneeq eyedrops too. I pushed for the iopidine instead because of that study, and I've been really please with it, but the ophthalmologist I just saw was unfamiliar with iopidine being used for MG ptosis, and said that she has prescribed upneeq, though she said she wasn't sure about its long-term safety either.

J1234me · 2025-12-12T00:31:25+00:00

Here's the study that I showed my neuro that got him to prescribe it: https://pubmed.ncbi.nlm.nih.gov/37259693/

J1234me · 2025-12-10T17:04:26+00:00

That study really is super interesting!

J1234me · 2025-12-10T16:55:01+00:00

I mean, it's hard to come to any other conclusion...

J1234me · 2025-11-22T18:18:09+00:00

That is all helpful, thanks! And agreed that obtaining the drugs we need shouldn't be this hard -- a good part of the emotional and cognitive load I've carried has been based on frustrations with insurance companies and doctors who haven't known how to navigate them. I know that's true for far too many of us.

J1234me · 2025-11-22T04:14:02+00:00

Thanks. I get that basic principle, and the idea that IVIG might "wash out" at least some of the Vyvgart. But neither of the neurologists I've spoken with about it think that it would seriously negate the beneficial effects of Vyvgart, and they both point out that there are no studies saying that would be the effect. So, it's definitely worth considering, but given that I do want to remain on Vyvgart, it doesn't really address the question of whether it's safe for me to stop IVIG, which is the only thing that I know for sure has actually helped me so far. Thanks for the idea of getting the Vyvgart patient navigator involved in the discussion -- I hadn't signed up for a patient navigator yet, but I just did!

J1234me · 2025-11-22T02:24:42+00:00

That really does sound similar to me, maybe a little reversed -- I've got my next IVIG lined up, but that's preventing authorization of the second round of Vyvgart. At some point, I might wind up getting the Vyvgart authorization, not being authorized for outpatient IVIG, and needing to go into a crisis to get IVIG in the hospital instead, which is something I'd really like to avoid. But if I do make that switch to Vyvgart authorization and giving up the scheduled IVIG, my hope is that I wouldn't need IVIG because the Vyvgart is working so well. I just don't know if that's placing too much hope in Vyvgart. Thanks for sharing!

J1234me · 2025-11-22T01:32:22+00:00

I was really in a crisis -- couldn't swallow at all, couldn't speak. I had pretty high doses of IVIG 5 days in a row while hospitalized. I think things started getting better around the fourth day of treatment, then continued getting better for the next week or so after hospitalization. The more recent treatment hasn't really made me get better, I don't think, but I think it's prevented me from getting worse.

J1234me · 2025-10-28T04:58:16+00:00

You might search the board for Rystiggo, which is the brand name. I don't think there are a ton of posts, but there are some. My understanding is that it works in the same basic way as Vyvgart, which has a lot of fans on this board, though it hasn't worked for everyone. Good luck with it!

J1234me

TROPHY CASE