Hi Galen everyone is different. I didn't begin my steroid usage until I went into crisis unfortunately.(started at 60mg for about 6 months and tapered down to just under 10) I have been taking that along with a small dose of Azathioprine for 3 1/2 years now. During the start of prednisone use, most people experience a profound weakness in the beginning which should good better within a couple of weeks. We are all like snow flakes , unique in our own way but I am praying that your symptoms get better. Stay in contact with your Neuro and watch your symptoms closely. Don't over exert yourself as well. I am 48 years old and have had this since I turned 30. The crisis nearly cost me my life. Learn to listen to your body and rest when needed. Hope this helps. some.

It took me about 5 months from starting at 20mg and then 30,40,50 and then 60 to get rid of all my MG weakness and symptoms. At that much prednisone, it is hard to tell what is caused by Mg and what from prednisone. What I noticed was that Mestinon no longer helped, just made me twitchy.
Good Luck
Russ

Hi Galen!! I have had MG since 2014 i am 55 years old. It is true MG is considered the snowflake disease every one is different. onece you get on meds and start getting better you are on the right track. MG does not completely go away sometimes it goes into remission thats all we can hope for. Believe it or not rest and avoiding stress go along way! Take care you are not alone.

Thanks for asking since I am in the same boat! I just started 60mg 10 days ago and feel like my vision is worse and i’m Still profoundly weak. My breathing is a bit better the past couple days. I know that there is a paradoxical worsening sometimes so hope things will tick up soon.

my doc usually gives me from 40mg to 5mg... and after that im good for 2-3mos. wow 70 is quite.. tough.

Galen_Galen - I have ocular symptoms and I found that relieving my anxiety tends to lessen my symptoms and vice versa. It may be something physiological with my stress hormones or it may be something as simple as putting less tension on my opposing weak eye muscles. Are you an anxious person? I am myself.

I forgot to mention - I started seeing some relief a couple days before I started prednisone, oddly. I'm not saying that prednisone isn't necessary, just that lessening my anxiety made it easier. I think that all in all it took maybe three weeks to start basically seeing normal again? But when my neuro has me do things like look all the way to the right or left there's still some double vision; however, I don't do things like that in my day-to-day life so I don't notice it.

Hi, thank you very much for all of your replies!

@Trinity419, wow, starting with 60 mg was probably very hard, I can't imagine that, but I am happy you were able to taper it! All of my syptoms did not dissapear as for now, but my neuro decided to taper pred as well, since I am stuck for now with getting better and started to get a lot of side effects. Thank for all the advice!

@Rhanson, I get the same feeling with my cholinesterase inhibitor, but frankly I am afraid to stop taking it, so I only reduced it. Did you stop to take Mestinon and stay only on pred?

@Jaime2014, thank you very much! I am very much looking forward to some kind of remission, but as for now I have to taper pred because of side effects. Hope the positive effects will last nonetheless.

@nurn, I hope you got better with time. First weeks on pred are tough, especially if you stared from such a high dose.

@march, I hope to taper under 40, that would be great. 70 mg is really a lot, you are right.

@copperzincbear, probably there are stress-related as well to some extent, but I had ocular symptoms for 6 years now and nothing really helped me before. Well, pred helped me and I can open my eye, so it is not as bad as it was, but I must say I dream of having normal vision again some day.

@ Galen A little late to the party but I assume you have only recently been diagnosed? Initially, the aim of the Neurologist is to bring your MG under control and Prednisone is the tool of choice as it is relatively fast acting at reducing the impact of your autoimmune system. Not a nice drug to take though. So, Prednisone is working on the cause of your MG. The next problem is to lessen the impact of the result of MG, be that droopy/closed eyes, slurred speech or whatever. That's when Mestinon comes in by giving the muscle junctions, what's left of them, more time to work. If you still have a lot of antibodies in the system you'll need a lot of Prednisone to bring the levels down and so it goes. The good thing is that at some point things do begin to work and your MG comes under control. At this point, work begins on a regime that will control your immune system, there are different ways of doing this, in my case, I take 75mg of azathioprine and 5mg prednisone, once a day, probably for the rest of my life. However, the odds are that you will still require Mestinon and often at varying levels that you will probably get to control yourself. Once you are at this stage it is called Remission. In our (MG) case remission is more like 'Under Control' given that there is no cure for MG, or at least not yet. That's my take, I'm no Doctor.