[Alan]

I’m on IvIG every 14 days for over 3 years now,,, it doesn’t seem to have the same results, does it loose effect after you are on for this long? Is anyone on IVIG and plasmapheresis at the same time? Does it work?

[Frank Morrow]

I was diagnosed with AChR positive Generalized MG in 2019. I was fortunate enough to get the diagnosis from a Neuro-Opthalmologist and he immediately sent me to a very well trained Neurologist who has hundreds of MG patients in his University Research Practice. I was put on Methotrexate 40 mg once per week and folic acid to counteract anything from the Methotrexate. About two years later after becoming retired and joining Medicare Advantage program it was necessary for me to change my Neurologist.

I’m happy to say that the second doctor kept my medication intact and didn’t change anything in 2021. When Vyvgart became available in 2021-2022 I added the Vyvgart infusion regimen to my medications for MG.

I’m currently starting my 14th cycle and that covers the period 11-2021 to 6-2025 or about 44 months. That’s an infusion cycle every 3-1/2 months or so.

I’m happy to say that my MG-ADL score is very stable at 3 most days.

[Alan]

Is anyone taking IVIG and plasmapheresis?

[shellyp]

In some cases, plasmapheresis may be used to remove harmful antibodies, followed by IVIG to help regulate the immune system.

• I just started IVIG with Prednisone and mestinon.
• I have had plasmaphoresis a lot in the past, usually during exacerbations on an every day x 5 day basis.
• I believe it is worth a try for you if the current regime is no longer working for you. Good luck!

[stephen-v-smith]

I do IVIg every four weeks and plasma exchange every two weeks. Plex was every four weeks for more than a year, but neuro increased frequency in an effort to control symptoms (it’s been a challenging year). The plan is to keep me on this routine until October, then reevaluate. I also take 30mg prednisone daily, along with 60mg mestinon 4x daily.

[phillyken]

Hi, I have been doing plasma pheresis at the University of Pennsylvania every three weeks. It works great for me. For those who may not know, plasma pheresis is an exchange of my plasma with the nasty MG antibodies for new plasma. The process takes about two hours and involves my blood leaving through my left arm, running through a machine that separates the blood from the plasma, then mixing in the new plasma and returning through my right arm. Totally painless.
I usually take a nap during the procedure. K

[kenneth j. bialkowski]

i self-infuse IVIG once weekly 190 ml. since starting i have not had a crisis in over 6 years. my symptoms (speech, swallowing) are controlled but still symptomatic. i have simply modified my lifestyle to live with my restrictions.

[Robert Zidle]

I’m fortunate to be able to maintain a fairly normal lifestyle using a low daily dose of prednisone (2mg) along with mycophenolate (2000mg). In the past, I had a mild crisis after dropping to 0mg prednisone and 1500mg mycophenolate daily, though considerable stress may have contributed to the relapse.

After a plasma pheresis treatment and a return to previous levels of prednisone, my condition has been stable for a year. I’m working with my neurologist to wean off prednisone but likely will remain at 2000mg mycophenolate for another year.

[Jodi]

Your story highlights the delicate balance between medications, stress, and symptom control that so many in our community understand well. Wishing you continued stability as you navigate this next phase. -Jodi, Patient Advocate

[JSR]

Prednisone has been effective for me for speech, swallowing, ptosis, and double vision symptoms. Pharmacological remission after ramping up to 50 mg, and maintained while tapering for one year to a low alternate day maintenance dose. Only adverse effect was some weight gain.

I’m late onset gMG (in my 70’s), AChr positive, thymoma robotically resected 6 years ago (but no one tested for MG at that time). World class neuroophthalmologist and team who saw my severe ocular symptoms tested for the antibody subgroups which were all negative, but ignored the positive AChr test ordered by my PCP. Go figure. Self-referred to neurologist, head of neuromuscular at my academic medical center, who chose the prednisone for me.

[Jodi]

It’s encouraging to hear how effective prednisone has been for your symptoms, and your persistence in seeking the right care is a powerful reminder of how important self-advocacy can be -Jodi, Patient Advocate

[Lou]

I am on (2 yrs) ultomaris every 8 weeks, 180mg long acting Mestinone and have titrated down to 1 mg prednisone. I was on IvIG for 20 months, 20mg prednisone and 60mg of Mestinone (4x/day).

Hoping to reduce prednisone to zero in the next month?

 

[miche]

Is ultimaris helping with double vision?

[paul spychalski]

60mg Pyridostigmine 4x a day and 5mg prednisone once a day and Lubricating eye drops 5x a day.

[Mama]

I am on 60 mg Mestinon three times a day. Initially, I had diahreah, but if I eat before I take it and take a probiotic, most times I am OK. I was on Prednisone for a short time and also did an IVIG infusion for four months. I felt really good but had to stop because of erratic blood pressure and bloodwork that was concerning. I had speech and swallowing problems initially, but the Mestinon works well.

[Jodi]

It’s encouraging to hear that Mestinon is helping with your speech and swallowing symptoms. Your story is a great reminder that finding what works often takes time and adjustment. -Jodi, Patient Advocate

[mik]

I’m at 1000 cellcept and down to 5 prednisone. Still have some walking, balance mobility problems. Was taking mestinon now off. In my opinion if your taking Mestinon then your condition is not under control very well. Thinking of talking with my neurologist next appointment to see if one of the newer infusion treatments would help my mobility issues.

[nora]

Hello everyone, I so appreciate the courage so many have to express the challenges associated with MG from diagnosis to treatment plans. My MG journey, like many others, has been very difficult almost from the beginning. I will now stay with my current issues to stay on topic and don’t become too lengthy.

It was 2 years before finally gaining minimal control with Vyvgart. My mg-adl went from a 15 to 6 at the low. Unfortunately, after 1 year Vyvgart no longer lasts to the next dose. The last 2 cycles I needed IVIG to help slow symptom progression. I also take prednisone. I have mestinon but don’t tolerate it well. Needless to say I’m still in search of the best cocktail for best control and my new “normal”.

Like the others sleep pattern, I do have central sleep apnea, a healthy diet, now I have steroid induced diabetes, stress, and activity/exercise each influence the severity of my symptoms. I often call myself a work in progress in finding the balance between these modifiable factors.

Forgive the length of the post, I’m a 1st time commenter and am told I can talk too much often.

 

[Bambilin]

I’ve been on IVIG every 4 weeks, 2000 mg mycophenolate, 10 mg prednisone, and 60 mg mestinon 4 times/day. This is working pretty well. I’m 83 years old and have had MG since 2018. I switched to Vyvgart infusions this week from IVIG. Hopefully this targeted approach to reducing IgG levels will allow me to reduce the mycopheolate and prednisone which suppress all of my immune system and have potentially harmful side effects.

[bmg]

Good afternoon,

I was first diagnosed with MG (binding, blocking, and modulating Ach Receptor antibodies) in 2013.

I initially was placed on Mestinon 60mg 3X day. This regime was adequate for a number of years. In 2022 with the onset of more fatigue and swallowing/speech issues the Mestinon was increased to 60mg 4X day. Then again, in June 2025, due to Mestinon losing its effectiveness and increasing issues with speech and swallowing, my Neurologist and I have decided to augment my treatment by adding Vivgart IV treatments.

Hopefully, this new medication will bring me back to near normalcy. I will keep you posted on my progress.

[OldDocRich]

My MG was diagnosed outpatient, but when I was admitted for the start of infusions I had a respiratory arrest. In the last 7 years or so, I have been on virtually every approved medication and some on {Phase 3 trials). Usually they start out working reasonably but, even the best, will lose efficacy after a while.

The latest med is Imaavy. I understand that I am one of the first. So far I have had only a few doses and it seems to be working well. With most of the other meds, my MG symptoms would return up to a week before the next scheduled infusion. I would have to force a pyridostigmine down and wait for it to take effect, otherwise I couldn’t swallow. Now I do seem to do OK until the next infusion.

I am not aware of any significant side effects yet.