Myasthenia gravis; Making an informed decision for my Treatment Path

Posted by carrie13 @carrie13, Feb 3, 2022

I have been diagnosed with MG. I’m trying to make an informed treatment decision: IvIG, steroids or Imuron.

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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!

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Hi, I am a 50 year old woman and I have been fighting Myasthenia Gravis for over 15 years now. I have many suggestions to helping you, but please remember we all have differences and what works for one, may not for another and always verify with your team of doctors first. The first thing that always makes my heart drop is the normal pushing prednisone/steroids first because it has horrible long term damage. Worse mistake I made, it not only caused significant weight gain, but messed with my temperature gage where I freeze to the point that my bones hurt to burned up to the point I felt like I was literally burning from the inside out, I became Irritability and I became snappy over the tiniest things, it caused significant bone density loss where I am just one point from having osteoporosis, and it caused diabetes. Not to mention that it makes significantly weaker before it starts to help you. Nothing I was told about before I was put on it. After I said enough and stopped it, The irritability, snappiness, and diabetes went away, but all the others stayed. I have talked to many others and it seems that the side effects are more common in women, but I didn't do an official study so that may not be true.
I have been on IVIg and the most important thing is to ask for Tylenol and benadryl if you can take them, before you get the infusion. This will help you to avoid the side effect of aseptic meningitis that can last up to 3 day after. Also, if you start to feel a head ache coming on, do not wait, tell the nurse and have her to slow it down and she may also want to give fluids with it. I also take Mestinon and I do well with it, but I talked to others who didn't so well, so best to take the advice of your Neurologist.
Little things that help me with symptoms: Avoid the heat like the plague! If you have to be somewhere that is hot, take lots of ice packs, or something to keep you cool. If you start have a hard time breathing, take a deep breath and count. I suggest doing this when you are not symptomatic to know what your norm count is. My norm count is 17 before taking another breath, but for most, that is the number that tells them to call the ER. While you are waiting for the Ambulance or driving to the ER, put lots of ice on your chest and get it as cold as tolerable if not colder and this will help relax your muscles slowing down the crises until you can get to the hospital. A cold damp rag or put your fingers on the air conditioner and get them cold and hold over the eye that is drooping and this will open it again but only temporarily. Helps if you are driving. Using something cold on whatever area helps until you can take your meds or get more advise from your Neurologist.
Stress, Heat, Viruses or any kind of sickness, Menstruation, Not enough rest, Over exertion in which the level of activity will most likely be way less than you are used to and you may have to take rest breaks several times throughout the day and do not allow anyone to call you lazy because you are not lazy, you are properly caring for your medical health. All of these things effect your MG. Also, make sure to get a list of medications to avoid like No muscle relaxers, beta blockers, cipro the antibiotic, the medications that have been known to cause MG crises. You can also find this list on the MS foundation website. Keep that list with you at all times. I hope some of these suggestions help.


Thanks for your insights @diane50. I hadn’t heard the advice to put ice packs on your chest at the start of a crisis. I do the counting breath test once a week, too, so I can remember what my baseline is.


I was diagnosed with OMG (just ocular so far) in Sept ‘23 by bloodwork. A neurologist switched me from the Prednisone treatment the Neuro-Opthamologist had me on, to Pyridostigm 3x daily. I am experiencing leg aches and indigestion at night only, but it is really affecting my sleep. They keep delaying my next appointment and the initial bloodwork is the only “testing” I’ve had. Should I be finding out if I have a tumor on my Thymus, or any other tests?


@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

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?

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Wow! Never considered that B4! Now I'm going off in another direction!


HELLO Becky the nurse ....

Until I was diagnosed with MYASTHENIA GRAVIS, after an 8 month search for a diagnosis, I had never taken ANY MEDS, unless a cough drop for a sore, overused church singing group voice. SO I HAVE BEEN GOOGLING LIKE CRAZY ... to be medically informed on MEDS and procedures.

I am close to being ME AGAIN, except for ACUTE ONSET INSOMNIA, which Prednisone, and possibly other meds cause. I have been in REMISSION since Christmas 2020, after 5 months in 5 hospitals. I have had only the original diagnosis treatment of 5 hours of 5 days of IVIG ... and am on 180 MGs of MESTINON and 2000 MGs of CELLCEPT daily, and got that dangerous/nasty PREDNISONE KILLED. So I am religiously taking my meds to stay in RECESSION ... but one does not really know what SIDE EFFECTS are causing what issues, as I am still on 13 different meds of over 5500 MGS daily, including blood thinners and anticlots, even though I aced the CARDIAC CATH just fine, but have insomnia, a cold right leg at night, and instantly bleed, from scrapes in arms and exposed legs, when out gardening and trimming sharp plants. So I am being super careful, as I have no way of knowing what MEDICATION is hurting me and what MEDICATION is saving me. I consider myself lucky .. as several MG patients in my four support groups need to use SOLARIS, VYVART, IVIG or that PLASMA--- still. So why am I better ... when my fellow MG patients suffer worse ... is it my 2000 MGs of CELLCEPT, that other don't usually mention taking ???

My hospital nurses for 5 months in 5 hospitals WERE TERRIFIC. The nurses tried to find answers to as many questions as I could write, as I had to use paper pads or white dry erase boards for any communicating, as the doctors gave me TOBRAMYCIN OTTOTOXICITY so had no hearing for 4 months .... and no voice either ...due to a slit throat trach ... because they did not recognize my MG throat breathing and chewing symptoms ... for what they really were. Because I arrived in the first hospital on 2-4-2020, pre CORONA PLAGUE, which arrived very soon after, no doctor would visit me in my hospital rooms, except at 5 or 6 am, for three minutes, if I had had a bad insomnia night and was still awake ... and quick with a pen on paper .. while he was getting on blue gloves.

So THANKS for being a nurse and patient with patients. Because I am taking so many MEDS ... it is hard to know what is keeping me SAFE and what is giving me SIDE EFFECTS ....

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@mgmember I enjoyed reading your posting. You have a very positive attitude!
This article talks about the side effects of mestinon, a drug that is very important for you. Yes, it does have side effects, but all medicines do (unfortunately)! If you feel that you are having a real problem with a side effect, talk to your doctor. As for cell cept, I was on it for 4years with no problems. It is also necessary for controlling the MG.
You may also consider getting a medic alert bracelet so there are more problems with medication mistakes. Sound like a good idea?

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