Myasthenia gravis; Making an informed decision for my Treatment Path

@carrie13, welcome. You're wise to consider your options and gather information to make an informed decision about which treatments to choose that are right for you. We have a lot of members talking about myasthenia gravis in the Autoimmune Diseases group, like @chglobig @smilton @mike1944 @janyce @Erinmfs @kiwigirl4 @fran1952 @rambo77 @mgmember @skhollandmt @pmdwarrior who can share the treatments they've had and what has worked for them or what went into their decision-making.

You may also be interested in this related discussion:
- Myasthenia Gravis: Share your treatment journey https://connect.mayoclinic.org/discussion/hi-everyone-let-me-begin-by-telling-you-some-of-my-story/

Carrie, while we wait for others to join in, can you share a bit more about you? How long have you had MG? What questions do you have about the treatment options like IvIG, steroids or Imuron? Do you have other conditions besides MG that need to also be taken into consideration?

Thanks for reaching out to me Colleen!
I recently was diagnosed with MG. I am a 69 year old woman and three months ago my hands just stopped working one day. The next day the left side of my mouth started to droop and I could not swallow anything other than liquids. At first I went to a hand surgeon who immediately referred me to a neuromuscular diagnostic center. At first they thought I might have ALS but quickly ruled this out; then they thought I had BIM and ordered blood tests in order to support the diagnosis. The blood test results came back and they thought the results had been skewed because I was on prednisone. A few weeks later they submitted more blood work and they came back exactly the same as the first. They had ordered additional blood tests and luckily one of the tests they ordered showed I had MG. Since then I have been put on Mestinon and now I have to decide what treatment I would like next. My new neurologist has recommended I start Azathioprine. I am very afraid of all medicationd so I have read lots of information about the other treatments that are available including steroids which I don’t do well on, IVIG treatments and this medication he recommended. I’m lucky that I have two pharmacists and an anesthesiologist in my immediate family and they have rendered opinions but they are all different from one another. I am very afraid of the long-term effects of some of the treatments ; those being steroids and Azathioprine. I’ve been told that it is difficult to get an insurance company to support the IVIG treatments because of the cost. I plan on beginning the recommended drug in hopes that I can tolerate it. I am very worried about my ability to swallow. For 3 1/2 months I have been drinking ensure diluted with water. This is all new to me and there are absolutely no support groups near me as I live in Maine. I would love to hear from anyone about any suggestions they have. Thanks for contacting me Colleen!

Unfortunately I am currently without a diagnosis. I was diagnosed for 8 years with MS.
My new neurologist thinks it’s something else.
She says I have an autoimmune neuro muscle joint disease.
I also have trouble with my throat. I have neuropathy in my throat and choke if I put too much food in my mouth because my throat is numb.

Are you currently on mestinon preferred drug for MYASTHENIA GRAVIS
have had it for over 26 yrs Luis do well.
Had Covid in Oct no taste or smell, on bed rest w rectal prolapse. Surgery April 8th to correct.
Might be allergic to. Always underwear. Ellen307

Hi Ellen! I am currently on Mestinon in the liquid form as I still cannot swallow. I take it four times a day… Twice a day At 2 1/2 ML and twice a day at five ML. At first I did not see any difference but now my hands are becoming more limber and I’m able to use my thumbs. In addition, I am taking Imuran also… I begin with 50 MG and now I’m up to 75 MG a day. It took me almost 2 weeks to decide to begin the pills because of all the side effects; but in the end I had to begin to take something so I chose this course. I’m sorry to hear that you are having so many problems after Covid and I wish you the best of luck on your surgery. I will keep you in my prayers. Keep the faith. Carrie

Hi Carrie,
Hope the mestinon helps you, did you have thymectomydone. I had my thymus gland removed put me in remission but do come out of it., waiting for sugery is eternity. Be happy when April it’s arrives.

Have a great day Carrie

Ellnen307

Myasthenia gravis? Can anyone give me information on experience living with this autoimmune disease? What is prognosis?

Hi @cedarrose, I moved your question about myasthenia gravis to this existing discussion:
- Myasthenia gravis; Making an informed decision for my Treatment Path https://connect.mayoclinic.org/discussion/mg-trestment-path/

I did this so you can read the posts by and connect with @carrie13 @Erinmfs @asquires @ellen307 @mgmember @skhollandmt @pmdwarrior

Cedarrose, have you been diagnosed with MG?

@carrie13 hello, you’ve said a couple of times about being concerned about side effects of the drugs. As a nurse, we learned that most of the side effects are Very rare. The FDA says that all the side effects must be listed “just in case.” 90+% of the time, people only experience mild side effects which gradually go away or are controlled with a change in dosage.
I’m glad to hear that you have started mestinon and are seeing benefits from it!
Keep up the good work and don’t let MG win! Sound like a good plan?

Hi there!

Just curious, how long after you had a test that was positive for myasthenia gravis did your doctor let you know? I’ve been experiencing symptoms for years and finally a new neurologist requested the antibody bloodwork. I got a notice from the lab on 10/21 that the results were ready so I looked at them and I have achr blocking antibodies, which as I understand from everything I’ve read means that I do in fact have myasthenia gravis. I realize it’s been less than a week, but I haven’t heard from my doctor’s office (I called on Monday). Just curious on the urgency that everyone else has experienced. I’d certainly like confirmation from my doctor and to get started on treatment ASAP. Thanks for your insight! 🙂