Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi there, some people might remember me from a while ago. I'm finally off of prednisone! The highest dose was 50mg about two years ago and I've been tapering down gradually, obviously. My last dose was 2.5mg every other day for about two and a half months and then my neurologist told me I could quit.
I usually noticed that when I'd taper down in the past, I'd get kind-of cranky for a few days...this time, going off of 2.5mg every other day to 0mg seems to have gotten me noticably more riled up for almost a week now. I keep waking up after like five to five and a half hours of sleep (though I normally only get about six) and people at work tell me I seem "angry" though I haven't, for instance, lashed out at anyone, I'm somewhat more aggressive and impatient. There's other things going on at work that aren't really stressful in the sense that there's doom ahead, but there's going to be a lot of hectic work for about a week more and it's been going on for like a week and a half already, so that might be a factor.
(It's weird because normally the symptoms I describe there seem like the type that I had when I first started 30mg prednisone a day, especially the sleep.)
I guess I'm just wondering if anyone else has had that and how long I should wait for it to go away. I suppose I could just use this hectic energy to get a bunch of stuff done and then it'd seem more like drive than stress.
BTW yesterday was the third anniversary of my diagnosis and I'm still purely ocular so it looks like it will stay that way. I haven't had any noticeable symptoms day to day for about two years now, though my neuro can still draw them out with those "follow my finger" tests. I bring this up just in case anyone's newly diagnosed, so they know that they might not necessarily have a severe course ahead. Three years ago I was freaked out once for having MG and once again for worrying about prednisone side effects and ended up "borrowing a lot of trouble" worrying about it, which made the MG worse (I'd actually see significant improvement if I could stop worrying about it).
I usually noticed that when I'd taper down in the past, I'd get kind-of cranky for a few days...this time, going off of 2.5mg every other day to 0mg seems to have gotten me noticably more riled up for almost a week now. I keep waking up after like five to five and a half hours of sleep (though I normally only get about six) and people at work tell me I seem "angry" though I haven't, for instance, lashed out at anyone, I'm somewhat more aggressive and impatient. There's other things going on at work that aren't really stressful in the sense that there's doom ahead, but there's going to be a lot of hectic work for about a week more and it's been going on for like a week and a half already, so that might be a factor.
(It's weird because normally the symptoms I describe there seem like the type that I had when I first started 30mg prednisone a day, especially the sleep.)
I guess I'm just wondering if anyone else has had that and how long I should wait for it to go away. I suppose I could just use this hectic energy to get a bunch of stuff done and then it'd seem more like drive than stress.
BTW yesterday was the third anniversary of my diagnosis and I'm still purely ocular so it looks like it will stay that way. I haven't had any noticeable symptoms day to day for about two years now, though my neuro can still draw them out with those "follow my finger" tests. I bring this up just in case anyone's newly diagnosed, so they know that they might not necessarily have a severe course ahead. Three years ago I was freaked out once for having MG and once again for worrying about prednisone side effects and ended up "borrowing a lot of trouble" worrying about it, which made the MG worse (I'd actually see significant improvement if I could stop worrying about it).
Prednisone was blamed for lowering my testosterone levels and does do that for many men. Maybe the levels rise again as we taper and our girly man phase leaves and we are just returning to normal ;-)
Withdrawal from prednisone is "often accompanied by irritability" says the drug literature. So if anyone complains, whack with a newspaper and explain you are going through drug withdrawal.
I don't remember irritability, but do remember aches and pains from my adrenals being unwilling to do their startup gracefully.
Good Luck
You are so fortunate.
If I was you would go to the 2 1/2 and get stable again. Then I would drop much more slowly.
Maybe just drop 1/2 to 2 on Mondays for a month and see how that goes.
You may be best at 2 1/2.
I was on 60 for a long time and then tapered slowly.
I just cant get below 7 without negative results. My neuro says that may just be where I need to be. I have tried so so many times for years to get below 7.
I may try again soon again but I am contend and stable at 7.
You would be blessed to be able to live at 2 1/2. I remember once it was discussed here that a drop should be 50 percent over a 6 month period. That would be you at 1 1/4 in 6 months. Enjoy life and be stable. You don't want the stress of the drop to make you worse. I would take the 2 1/2 and get back in order. Then drop much slower.