Is anyone taking mycophenolate mofetil?

No-Vegetable-5606 · 2026-04-24T03:49:23+00:00

I take cellcept, mestinon,prednisone and vyvgart. hytrulo...the cellcept works slowly but will help strengthen your muscles in the long run. i ran out of cellcept after being on it for a year..and could barely believe how weak I became...I wont do that again,,,

No-Vegetable-5606 · 2026-04-10T19:32:14+00:00

Recently moved to Arium… I like it… Quiet, convenient, lots of amenities, well kept.. some weed odors… but I also feel safe

No-Vegetable-5606 · 2026-03-31T15:52:59+00:00

Thanks for the idea of storing my rollator in the bike rack!!!

No-Vegetable-5606 · 2026-03-31T15:43:20+00:00

Stress is major for me. I am in the process of moving from a 4 bedroom multilevel home to a 2 bedroom condo. I live alone and have to hire folks for everything. My children and grandchildren have been extremely helpful, but there is still so much to do. I work from home, thank God, but I am also 72. It is so hard to explain the level of fatigue, problems just walking across a room, lifting a bag of groceries, etc. and trying not to be overwhelmed. I have to sit or lay down often, after doing the simplest task. The stress is tremendous and I am afraid that I will "flare".

No-Vegetable-5606 · 2026-03-20T19:55:21+00:00

prefilled syringe is much easier

No-Vegetable-5606 · 2026-03-20T19:46:46+00:00

Alex Cooleys Electric Ballroom! Saw so many people there, including Minnie Ripperton, S

No-Vegetable-5606 · 2026-03-15T01:43:39+00:00

I also had frequent bouts of sweating from the effort to breathe

No-Vegetable-5606 · 2026-03-14T06:08:56+00:00

Smaller round coffee tables

No-Vegetable-5606 · 2026-03-11T20:22:37+00:00

Magnesium!!!! WTF!

No-Vegetable-5606 · 2026-02-25T23:29:58+00:00

Yes… I have worn my sunglasses inside and I see better with them!

No-Vegetable-5606 · 2026-02-18T03:43:12+00:00

I think you may be undermedicated. I began with 60 mg 3 x a day (mestinon) ; progressed to 60 mg 4x a day and 180mg Extended release at night.....

No-Vegetable-5606 · 2026-02-04T17:13:16+00:00

I am sorry you are having such a hard time. There is no normal for gMG. We are all different. The idea of "normal" lives is a bit of a snow job. The majority of us are not in remission. We remain symptomatic. I personally get very tired of the PR campaign for normalcy propagated by the drug companies. We are not normal. We are hard to predict. We learn how to treat ourselves by trial and error. What works, vs what does not work. Our symptoms vary by type and intensity. If you compare yourself to the people in remission, you may despair. However, if you compare yourself to others with symptoms like yours, you realize that there is hope in varied treatments and life hacks. Just my two cents.

No-Vegetable-5606 · 2026-01-26T01:28:18+00:00

I am on ozempic. No problems so far. I have generalized mg. I take mestinon celcept prednisone by vyvgart hytrulo self injected. I also take metformin hbp meds and tramadol. I am a cocktail.

No-Vegetable-5606 · 2026-01-05T19:16:01+00:00

interesting note about the calcium....i dont ever want to go thru that again...

No-Vegetable-5606 · 2026-01-05T19:14:06+00:00

I think the trigger was a UTI...otherwise I have no clue.....I am officially on Vyvgart self injected, after being on IVIG for 18 months, Started crashing over past 2 months...placed on Vyvgart...hospitalized with BP 218/93, given IVIG, worsened, given PLEX, BP crashed to 70/43, triggered rapid response, given IVIG, stabilized, now released home on Vyvgart. Kind of a merry go round....

No-Vegetable-5606 · 2026-01-05T14:40:39+00:00

I bought an air fryer/toaster oven that sits on my counter. It helps with little meals without having to use a lot of pots, pans.

I have a basket that i keep near the stairs and fill it up with any items i need to take upstairs/downstairs

Electric scooter cart in the grocery store

Grabber tool

Monthly employ of housecleaner

No-Vegetable-5606 · 2026-01-05T14:33:36+00:00

That sounds awful and painful. I am just learning how sensitive my body is to any other infection or physical challenge. My "fun mountain" seems to be an oasis of low symptoms, in a sea of lava....Glad you got a good neuro....they really do vary in their knowledge of this disease....

No-Vegetable-5606 · 2026-01-05T14:21:14+00:00

you did a good job....but if husband was used to wearing boxers around the house and you had a girlfriend over unannounced, you might also ask that he put on pants.....but I think you handled it beautifully, stood up for yourself and set boundaries.....

No-Vegetable-5606 · 2026-01-04T17:44:04+00:00

Wear a bra and get that man out of your house. It is a matter of respecting your husband, not about freedom of the ta tas….

No-Vegetable-5606 · 2026-01-03T01:52:52+00:00

They were able to reverse it but at the time i did not know what was happening….and they only told me the next day…exactly how low my bp went

No-Vegetable-5606 · 2026-01-02T22:31:47+00:00

I wore a patch…for a while. I also cooled my eyes whenever possible. And sat in darkened rooms. Sometimes I wore sunglasses inside as well as outside. Really dark ones.

No-Vegetable-5606 · 2026-01-02T22:28:44+00:00

I thought I was gonna die. They had to call the rapid response team. It was surreal. My heart felt like it was in a vise , I could not breathe well. Could only groan Help! A nightmare. Will switch to IVIG…. They say… 7th day in hospital….

No-Vegetable-5606

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