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Myasthenia gravis; Making an informed decision for my Treatment Path
I have been diagnosed with MG. I’m trying to make an informed treatment decision: IvIG, steroids or Imuron.
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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.
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3 ReactionsThanks 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?
Wow! Never considered that B4! Now I'm going off in another direction!
@mgmember I enjoyed reading your posting. You have a very positive attitude!
https://www.medicalnewstoday.com/articles/drugs-mestinon-side-effects
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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