Background: I am about 8 months newly diagnosed with ocular MG. My symptoms were managed until a month ago, when I had a relentless week of constant double vision. Felt like I was walking around cross eyed. My daily dose of Mestinon was doubled to 120mg 3xs a day. It only lightly suppressed the issue. And so I began my first ever course of prednisone. I am barely 2 weeks in, on 20mg a day for the foreseeable next 30 days.
Like most people, I have a very bare understanding of Prednisone. In my minimal research, I did learn that Prednisone can help the possibility of it generalizing. That benefit alone should be enough.
But in my minimal research I came across far more about the contraindications that makes me nervous about being on this drug (typical internet). Bad for your bones (I take 5,000 ius of D), can make you bloated, maybe nutty or jittery, hard to get off them, cushings, psychosis, moon faced, the list goes on. And I have a (perhaps) baseless fear that I am going to be on a revolving door of, off and on again prednisone treatments for life because they are difficult to get off.
I have to do whatever it takes to maintain a quality of life with this disease. I just hope through shared wisdom I can get a better understanding of this drug and in turn feel better about taking them.
-I was hoping some of you could share your experiences with prednisone. I know there are other medical options, but I want to hear about this drug specifically.
-How long did your courses run and what was the dose? What was the outcome?
-Did your doctor provide an exit strategy? I understand that symptoms may reappear in full force even when tapering off. So my confusion is, I can't imagine you should or can be on corticosteroids for life. How did you and your doctor know when to take you off?
-Do you get off a course and it's like two steps back one step foward? Bad for a time till your body re-adjust to own natural productions?
-It is my meager understanding that Prednisone at best should "calm"/reset our out of whack immune systems? I am hoping that someone could help me understand how it addresses an incurable disease. (Please explain it like I'm in 6th grade)
-I do run 3-4 miles 2xs a week, and unenthusiastically work out 4xs a week at the moment. My diet is maybe a 7 in terms of healthy, 10 being like an organic only macrobiotic dedication. Never gonna happen. But is there anything you've done to help mitigate the bloat that I still seem to be experiencing? Or anything you've done to counter any of the typical side effects that you could share?
-Is there anything you wished you knew about before you started taking them?
Feel free to answer any, all or none of my many questions. I greatly appreciate any experiences people are willing to share! Thank you!
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