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...
Good day -
I hope this commentary finds you all in good spirits and health.
Had my every other month IVIGs last week (Sept 28/30). Also had flu shot on my way out of the Debakey VA in Houston, where I receive treatments that include iVIGs.
Up until this last infusion series, I was able to do light physical work in 10 to 15 min increments and rest for 20/40 mins. I would work until I would break out in a sweat then rest and hydrate. Work/exercise included raking, shoveling, Painting, installation of kitchen cabinets in our new Cottage, set tile and grout. Was feeling pretty good about being able to do some of that stuff. Would like the work sessions to last longer but......
Anyway - after the last IVIGs I have been beat. No problems eating or breathing. All I have been able do for the first few days after the IVIGs was sit - just tired. I am able to walk around and do the necessary stuff. I was able to do some caulking yesterday, but again today I just feel beat.
Am wondering - How many of you have experienced what I am trying to describe? I feel like I moved back a notch.
Could my "condition" be related to the flu shot?
My Neuro consistantly has stated that the IVIGs reduce the progress of my disease. I know that the IVIGs are used, most often, during Crisis.
How many of you are on Maintenance IVIGs?
How long have you been on this Maintenance program?
When you have your IVIGs, do you feel better? And if not, how soon after the IVIGs are you feeling better?
My eyesight is still OK - Some minor diplopia but manageable.
My mind/brain seems to be unchanged. Usually a bit foggy and seems like I am perceiving "life" in a state of altered perception. I can do math and stuff like that. It just feels like I am perceiving "life" at 80%.
Current medications:
Imuran 50 mg - Once a day - evening before bed.
Mestinon 180 mg - Once a day - evening before bed.
Mestinon 60 mg - 2 pills - 8 am and 5 pm.
IVIGs - 3 concurrent days - every other month. 5 treatment series. Had 3 monthly IVIGs before the current 3 day stint.
Prednisone - 5 mg - 3 pills - every morning.
Baclofen -10 mg - 1/2 pill - morning and evening. To reduce tremmors.
I do not want to appear to be whining..... I am just concerned.
Thank you in advance for your comments/thoughts.
Scott
He has agreed that my responses to the IVIG treatments are "a-typical", but feels they are working.
I am much better this year than last, when I first started treatment.
I will lower my Prednisdone to 10mg every day beginning in January. I will increase my Imuran at that time too. We shall look at increasing the time between my IVIGs with him during my next meeting with him in Mid Jan. He does not want to stop IVIGs yet.
He is pleased with my body strength and my eye movement is good.
Sooooooooooooooooo -
I will continue to follow his treatment paradigm and will try to be a good boy.
I am very grateful that I can breath, have a fair amount of strength and can see pretty good.
I was hopeful that I could stop the IVIGs.
Hope all are well.
Scott
I am glad you reported back about your recent meeting with your neurologist.
Are you still taking Baclofen? If so, how is it going? I am asking because I often have trembly weakness when my plasmapheresis treatments wear off, and although I can live with the trembliness now, it might be nice to have something up my sleeve if the tremors increase.
- Nan
I did chat with my Neuro about my Baclofen use/prescription for restless legs:/pain in legs at night. At first he seemed somewhat dubious, but when I told him that it appears to help sometimes, he was on board and supported it's use for me.
I took one last night and still had achy/restless legs. although not as severe as other times.
My legs do not feel that way every night and the degree of discomfort varies. I have not taken it every night, so the effectiveness of the Baclofen is questionable.
Might be placebo effect.
Good luck - take care -
Scott
Increasing my Imuran to 100mg/day.
Will reduce Prednisdone to 5mg/day in April, maybe 10mg every other day.
Still wants me doing the IVIG thing but may increase the time between treatments after our next visit in May.
They drew 20 tubes of blood last week and everything looks good.
He did notice my high FSH and low testosterone.
Looking into Testosterone treatment as a way to increase stamina, strength and general feeling of well being. I have passed it along to my PCP for her thoughts. We shall see.
I must find a way to get more exercise........
Hope things are going well for y'all. :-)
Scott