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...
I heard from my neurologist today in regards to my over-the-top sweating ~
It is the steroid and he wants me to start tapering off of it starting today. It will of course be a slow taper so I will be dealing with the sweating for awhile, but hopefully not forever.
The dilemma we are facing is that I can't do IVIg, or steroids. Of course, I am not seeing any benefits from the CellCept as of yet. It has only been 6 weeks of CellCept. I am increasing my Mestinon to 90mg every 4hours starting today and seeing how that helps.
I go back in for my next appt. on the 31st of July. He said by that time, hopefully we will have some other options to consider, but he is not sure there are other options at this point. He is not being a downer by any means, just being honest, which I greatly appreciate.
I do struggle to get through the day.
I woke at 6 this morning and went I went to brush my teeth, my arms were struggling to complete the task. That is way too early in the day for that to be happening! :/
So what happens?
Thoughts?
It is the steroid and he wants me to start tapering off of it starting today. It will of course be a slow taper so I will be dealing with the sweating for awhile, but hopefully not forever.
The dilemma we are facing is that I can't do IVIg, or steroids. Of course, I am not seeing any benefits from the CellCept as of yet. It has only been 6 weeks of CellCept. I am increasing my Mestinon to 90mg every 4hours starting today and seeing how that helps.
I go back in for my next appt. on the 31st of July. He said by that time, hopefully we will have some other options to consider, but he is not sure there are other options at this point. He is not being a downer by any means, just being honest, which I greatly appreciate.
I do struggle to get through the day.
I woke at 6 this morning and went I went to brush my teeth, my arms were struggling to complete the task. That is way too early in the day for that to be happening! :/
So what happens?
Thoughts?
Hope you find some relief soon.
God bless.
I checked and sure enough, one of the "rare" side effects of prednisone can be excessive sweating. A list of all side effects makes one hope that we are only going to get a few of them.
http://www.webmd.com/drugs/2/drug-6007-9383/prednisone-oral/prednisone-oral/details/list-sideeffects
I wonder if the mestinon, which caused me to have excessive sweating, might add to make it even worse.
Good Luck
Two weeks ago, I could barely lift my feet from the floor to walk and getting through doorways was really scary. I just got finished on Wednesday with five treatments over ten days, and I am much stronger, shortness of breath, blurred vision and neck pain are all gone. It is more involved than Ivig, but well worth it to me.
I am fairly housebound without it.
Hope they can find something that works for you.
Do you think you may be a candidate for thymectomy? That has helped me more than anything else, frankly. It was tough to go through, but definitely worth it.
Thanks for your encouragement and thoughts!
I have increased the Mestinon to 90mg every 4 hours and I might say it has helped some..... this weekend was a bad weekend for me though...Saturday in particular - was down most of the day - struggled with talking and catching my breath etc...
Today is better though - but still doing the out a breath often when I talk if I am moving around. :)
As far as the thymectomy, CT shows I don't have one to remove so that is off the table. :)
When I see my neuro on the 31st of July, I am going to talk about plasmapharisis - and see if this is an option for me. If this option is something that he thinks may be of benefit or could go the way of IVIg. :)
Until then, I will monitor symptoms and take it day by day - and slowly get off these icky steroids ;)
Are you taking mestinon through the night...that might help you.
I would take it when I got up to go to bathroom. I dint se alarm to take it
but taking through the night helped.
This is a crisis for you....If you cant swallow or have difficulty breathing I would head to hospital...the best one around.
I had those symptoms and they said I got there just in time. I ended up on ventilator.
This can be so serious.
Plasmapherisis may be what you need asap. If you stop breathing the ambulance may not know how to treat you.