Tammy,
Welcome to the forum!
I'm sorry that your son has MG, but it is manageable. It might take some time to figure out what the right balance of drugs and lifestyle change will work for him.
I am concerned that your neuro would not START Pred with every other day. Now, after six weeks on Pred, your son's adrenals might already be "in sleep mode" and not be able to handle a drop in 60 mg!
I have known many people whose neuros have made a huge drop such as that in their "every other day" dose after they've been on it for a while and it caused their patient to have an adrenal crisis. If your son has symptoms of extreme fatigue (sleepiness), sweating, increased muscle weakness, or any other odd signs, PLEASE go to the ER. An adrenal crisis can be life-threatening.
http://www.cssassociation.org/patien...an-mesker.html
http://www.mayoclinic.org/prednisone...s/faq-20057923
Also, please talk to the neuro about this, too! The "hormone" field is not their area of expertise. It is that of an endocrinologist. Sometimes doctors can be too cavalier about drugs.
Ocular symptoms are difficult to get rid of except with those strong drugs. Choosing which drugs to use are a very personal and hard choice.
IF he goes on Imuran, his doctor needs to do the TMPT test first.
http://labtestsonline.org/understand...tpmt/tab/test/
http://www.ncbi.nlm.nih.gov/pubmed/19129430
http://emedicine.medscape.com/article/1829596-overview
Are there cancer risks in your family's history? That might impact his choice.
This is an odd side, but did you know that boy's brains do not fully develop until about age 25? Think about what those drugs might do to influence that, too!
And I have to wonder what effect they would have on the younger immune system.
Has he read up on MG?
www.myasthenia.org
www.mdausa.org
He should know that heat can make MG exponentially worse. It is one of the causes of an MG crisis, where a MGer's swallowing, breathing, or general strength tank. This can happen quickly and there is no way to know how bad it will get. In that situation, he would need to dial 911. I'm not saying this to scare you, but to make you aware of what can happen. It doesn't mean that it WILL happen!
There have been some younger people on here who have used Pred or other immunosuppression. Again, they do come with side effects and only you guys can figure out what to take or not.
There's a lot to know about MG. I hope you'll take the time to read up on it. He has to know that pushing MG is not a good thing. Alternating an activity with rest, even if he's on drugs, is a smart thing to do. He might need more sleep or a nap during the day.
If MG has not affected his breathing muscles yet, this might be a good time to have baseline breathing tests done. That way, a pulmonologist will know the difference between his normal and what the chest wall muscles are like when they are weaker.
MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure) are breathing tests that show how well a MGer is doing at breathing air in and out. It's very important to include these tests in the pulmonary function tests that are done.
A pulmonologist is a very important doctor to have for someone with MG. They also work with neurologists in a hospital if a MG patient ever has a MG crisis.
Tweaking the Mestinon dose amount or time in between doses can take time to figure out what is the optimum schedule for him. A larger dose is not necessarily better. Too much acetylcholine is just as bad as not enough.
Myasthenic Crisis: Not enough acetylcholine getting to the muscles due to not enough Mestinon or other drugs.
Cholinergic Crisis: Too much acetylcholine getting to the muscles due to too much Mestinon.
If someone is more active, taking Mestinon every 3 to 4 hours can be better. Do not change a dose unless you speak to the prescribing physician first and set up some parameters of what kind of changes he can make.
What else can we help with?
I hope the taper goes well and that you can figure out what to do next. This can all be very overwhelming, so I hope you will also take some time to let it sink in! It's rough knowing that your son is sick and not knowing exactly how to help. Don't forget to take care of yourself as well.
Annie