Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people who’ve been there
  • People who understand what you’re going through
Sign Up Log In
Powered By
Real members of MGteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MGteam Member asked a question 💭
California, CA

Hey guys was admitted into Hospital after flare up. Gave me my first IVIG of many. It’s been two weeks. Still super weak. Have another 5 day round this time at home. Taking the Mestinon and Prednisone too. Should I have my strength back by now? Also losing weight since I can’t swallow food we very. Thanks!

August 2
 · 
Reactions

Answer Summary

Members rallied around a question about how long IVIG takes to show improvement, sharing that recovery timelines vary widely, with some... Read more

Members rallied around a question about how long IVIG takes to show improvement, sharing that recovery timelines vary widely, with some feeling better within a week and others not seeing sustained improvement until their fourth infusion cycle, roughly two to three months in. Several members offered practical nutrition tips for swallowing difficulties, including mixing Ensure with pudding or chia seeds, using high-calorie tube feeding formulas, and starting with pureed or minced foods before progressing to whole foods. A recurring theme was the importance of patience, faith, and trusting the medical team while the body slowly adjusts to treatment.

A MGteam Member

The treatment for myaesthenic crisis is ivig or plassma exchange.post crisis usually there is reduction of weight.please dont get panicked.please take nutritious food in either solid or liquid form and avoid exertion.May god bless you and all of us

August 5
A MGteam Member

From my experience recovery after any hospital stay can be exhausting and slow. I hope your recovery is going well.......to me slow is OK as long as things creep into the good stage. Keep getting better!

August 6
A MGteam Member

Just finished my 4th Vyvgart infusion of this cycle this morning. It’s not having the impact it usually does, but I’m thinking a lot of that’s down to 5 weeks of big heat/humidity that’s starting to dial down…
I’m pulling for you Man, sounds rough just now…🫡

August 19
A MGteam Member

Thx Bob!

August 19
A MGteam Member

Hello.
Sorry for your delayed improvement.
It is a frustrating and scary time . With the fatigue & loss of energy on top of all the MG symptoms it can be an overwhelming waiting period until you feel better . Not knowing when you will improve , is the unknown factor and wanting a firm timeline of healing is expected . Not being able to feed well is an additional burden.
I believe with time , steroids on board and repeated IVIG treatments your body will have the ability to adjust, adapt and heal .

I had a similar course and around the 4th IVIG infusion cycle I had sustained improvements. ( around 2-3 months later ) It was touch and go because when you are really sick and in a MG exacerbation crises your body is fighting the good fight and keeping you alive is the beginning . It is exhausting. I was weaned off steroids very slowly over 3 months without MG exacerbations. Placed on a MG IVIG MAINTENANCE therapy program of every 3 wks cycle ( 1 gram / kg IVIG ) and now switched to every 4 weeks cycle with impressive improvement of my MG . The IVIG treatment improvement wears off around 21 - 28 days then another IVIG treatment is given.
I have seronegative MG so my treatment options are limited. A discussion of CELLCEPT treatment is in the works with hopefully a switch to VYVGART if my health insurance allows it. This is my MG treatment experience however everyone has different types of MG , are eligible for different treatment options which historically are helpful and respond differently accordingly.

Meanwhile your MG NEURO specialist will decide what is best for you in the interim to get you over your awful MG hiccup exacerbation and get you stabilized.
Depends on what type of MG you have if you are eligible for the other MG treatments available.
Baby steps for improvement .
Lots of Patience , Must have FAITH and prayers.🙏

August 19

Related Questions

View All
A MGteam Member asked a question 💭
Tacoma, WA

Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data and Privacy policies.
Already a member? Log In