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...
Next Monday morning I go in for my first IVIG treatment. I am still very nervous about it and especially about the 60mg of prednisone I am to start that same day. I conveyed to the nurse my concerns about the effect on my blood sugar that I am sure that much prednisone will bring. She asked the doctor about it and he said it was part of the treatment, but that I should monitor my blood sugar if I was concerned.
I do so want to give this treatment a fair try because I want to get better, but my scaredy cat side keeps wanting to somehow get out of it. Wouldn't you know it, I have been feeling somewhat better the past few days. Swallowing problems have all but gone and only had a very slight breathing problem this morning. Only a little weakness, not the overwhelming kind I had been having.
So then comes the denial. Maybe I don't really need this treatment, maybe I will get better on my own, etc.
Just scared about the future and needing to rant a little
I do so want to give this treatment a fair try because I want to get better, but my scaredy cat side keeps wanting to somehow get out of it. Wouldn't you know it, I have been feeling somewhat better the past few days. Swallowing problems have all but gone and only had a very slight breathing problem this morning. Only a little weakness, not the overwhelming kind I had been having.
So then comes the denial. Maybe I don't really need this treatment, maybe I will get better on my own, etc.
Just scared about the future and needing to rant a little
I am the worlds worst to think maybe I don;t need the treatment when I am having a good day.
Holding you up in good thoughts and prayers for Monday.
Let us know how you do.
Hugs,
Annette
I would do IVIG again in a heartbeat.
Feeling better soon coming your way w IVIG
Prednisone, especially in such high doses scares the (&*^%+## out of me! I saw firsthand what steroids can do for and to a person in the case of my late hubby. He was such a trooper. I went with him for every hospital stay, every doctor visit and every treatment.
I guess what makes this double scary is that I will be doing this alone. He was always my cheerleader in everything I did. Now I am on the hot seat and have to be brave enough to do this. Very hard for me. My stepdaughter seems to understand and has offered to keep me company through this. My own daughter, not so much. I think she is in more denial than I am and thinks that maybe I am exaggerating how bad I really feel at times.
Thanks everyone for your encouraging words. It means a lot to me.
Linda
bi-weekly for now and we are hopeful that I can reduce it to one day and eventually none. It has really helped.
I hope you see positive results too
So my rant is over, Best of Luck and keep us posted!!!
Darci from Chicago
Dx with MG in March of 2012
Thanks for your input. I, too, am a borderline diabetic. I am very careful about what I eat, (high protein and low carb) to keep my blood sugars under control. I have recently lost a lot of weight and this helps. My blood pressure is low normal now, when before it was only semi controlled on two meds. I just hate to think of undoing all this and possibly get full blown diabetes permanently just to "try" prednisone when I already know how crappy I feel on it and how much weight I gain.
I , too was diagnosed with asthma, but mine only bothers me when I have a chest cold. I wonder now, if it was MG all along that was reacting to the infection in my body. Because when I get a cold, I 'really' get a cold and am down and out for a while and usually need antibiotics and breathing treatments, sometimes steroids, which I always try to avoid.
I guess I just wanted to hear that it is possible to be treated without prednisone. I am still wanting to back out of this because of my fears.
I am not a doctor... but could they wait until after the infusions (a few days at least) to determine how much prednisone you need? Or possibly start you at a lower dose than 60mg?
We all have fears... but sometimes there is an "inner voice" telling us the path that work better for us.
Keep asking questions and if something is not sitting right with you, ask more! ;)
Love, Becca