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...
Still waiting to be hooked up with a specialist who'll collaborate with a local neurologist to reduce the number of times DW (da wife) and I have to endure the 5 hour round trip drive to Philadelphia or Baltimore (there are many great ones in both cities). In the interim, I've been seeing a very helpful local neurologist who by his own admission "doesn't know enough" and who has 3 MG patients (that may be his career total).
A question has arisen about when to take the Timespan: I'm prescribed to take it early AM, followed by 60mg every 3 or 4 hours for a max of 60mg TID..
I figured that's 360mg per day, asked him about 2 Timespans instead - which would be much more convenient for me. He declined, so I started doing that on my own with much less double vision than I'd been experiencing (Fortunately I've only experienced very mild symptoms).
Now there's a problem with insurance because the Timespan is not yet due, because of my increased intake.
I'd appreciate any comments as to who's been prescribed Timespan only in the AM, etc.
Again, thanks to all for the support you've provided!
A question has arisen about when to take the Timespan: I'm prescribed to take it early AM, followed by 60mg every 3 or 4 hours for a max of 60mg TID..
I figured that's 360mg per day, asked him about 2 Timespans instead - which would be much more convenient for me. He declined, so I started doing that on my own with much less double vision than I'd been experiencing (Fortunately I've only experienced very mild symptoms).
Now there's a problem with insurance because the Timespan is not yet due, because of my increased intake.
I'd appreciate any comments as to who's been prescribed Timespan only in the AM, etc.
Again, thanks to all for the support you've provided!
Request time span for morning and night. Then take both in morning.
Maybe if you take at night you wont need so much in the day time since you will be more leveled off. You could try it.
I am amazed how new ideas help. I was trying so hard to get down from 6/7/6/7/6 to 6/ 61/2/6 of prednisone. Every time I went to 6 1/2 I would get really sick.. One time bladder infection, one time flu, one time in hospital for bronchitis. I want to so much to reduce. Then my GP suggested I take 6/61/2/6/7/6/61/2 basically drop 1/2 one day a week for 3 weeks and then drop another day.
I am having success. My reason for sharing that is because it is crazy how we have to get so creative with this disease to manage it.
Get better
Have you asked what the cost of the mesti is to pay out of pocket? You might be able to pay cash for it and get around the insurance thing but I don't encourage anyone to make changes to their medications without the expressed consent of their doctor. It's one thing to do that with your regular mesti because it's meant for the acute symptoms but the timespan is a different issue. Please call your doctor or go see them to find out why they don't want to prescribe the medicine BID (twice a day).
I hope you get it sorted out.
The reason given for not taking a Timespan in the PM was "you don't need Mestinon while you sleep". However, when I took one in the AM and one in the PM, my double vision was much less of a problem than when I took one in the AM, followed by 3 60's during the day (and no Timespan in the PM).
Fortunately, I have beaucoup 60's left over from before I started on Timespan.