[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.

[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.

[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.