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...
How much Prednisone do any of you take on a daily basis to maintain your MG? Do you take it with Mestinon and if you do, how much do you take of that.
I am experiencing a flare, profound weakness in the morning and am taking 20 mg a day of Prednisone and 2-3, sometimes 4 Mestinon a day. I seem to get better as the day goes on, but not completely. I was doing okay on 5 mg of Prednison w/o Mestinon over two months ago, but fell and broke my arm and that seemed to exacerbate my symptoms, so started to increase the Prednisone and Mestinon.
Some mornings are better than others, but today I could hardly get out of bed. I couldn't sit up in bed to get up, I had to hold onto the bedside table and more or less roll out of bed. I just feel weak all over. Once again, every time I get a flare, it is always different.
Careful, I wrote this in an earlier thread
BTW. you can generally vary your intake of Mestinon as you feel suits. Prednisone is rather different and you vary your prescribed dose at some considerable risk to yourself. Put another way, do keep in touch with your Neurologist and by all means question but take the advice as well as the medicine!
Take care, try to be patient - I do think you need to take some urgent advice from your Neurologist.
Peter
So when we are getting along with prednisone (or other immune suppression med) at the right dose, we should not have to take much Mestinon -- maybe a pill now and then when we need a boost, and more if we have a flare.
My neuro thought that my prednisone level was right when I got rid of my worst symptoms and didn't need Mestinon on a regular basis. If I did, she thought I might need a little more immune suppression.
And to the conclusion-- if you already are taking several mestinon per day and then you get a flare, you don't really have much room for increasing it to cope. My own personal goal was to take enough immune suppression that I didn't need Mestinon most days. If I needed it more than for a few days, then I adjusted the prednisone a little higher.
I did my own titration of both mestinon and prednisone under the guidelines of my neuro. I told her of each change I was making and why and got a confirmation that it was a reasonable change before I did it, but I figured that I needed to control my meds as I was absolutely the best judge of whether I was doing better, the same or worse. As my neuro told me; "I ask you how you are doing' you tell me; and then we talk about adjusting the doses" and we just streamlined the process so I used the electronic option to tell her how I was doing and what I thought I should do with the med doses, and she either agreed or explained why I shouldn't. It worked great for me and my path through MG. Of course having a neuro who responded within 24 hours via electronic messaging made it work.
good luck
Russ
Chuck