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...
After years of progressing weakness, I finally have a diagnosis!
I am relieved. My progression wasn't typical. It started with my left side and
then generalized. I had good days and bad depending on how much I would attempt to do. Finally, swallowing and breathing issues along with a newly drooping lid lead my neuro to test and dx MG. The Mestinon works wonders most days, but wears off quickly. I'm thankful for what it DOES do though. What a difference!
The neuro says I must do more though. He's prescribed a heavy duty immnunosuppressant called TACROLIMUS. He knows I cannot do steroids due to my pseudotumor cerebri.
Anyone used TACROLIMUS? He said it starts working in weeks instead of months. From what I've read, it's really strong medicine. I am scared to take it. It just sits here waiting for me.
I've been untreated for at least 4 years and he says I must get going with treatment to stop progression. The Mestinon is helping a lot. I wish I could just do that.
What do you think?
THanks,
Carly
I am relieved. My progression wasn't typical. It started with my left side and
then generalized. I had good days and bad depending on how much I would attempt to do. Finally, swallowing and breathing issues along with a newly drooping lid lead my neuro to test and dx MG. The Mestinon works wonders most days, but wears off quickly. I'm thankful for what it DOES do though. What a difference!
The neuro says I must do more though. He's prescribed a heavy duty immnunosuppressant called TACROLIMUS. He knows I cannot do steroids due to my pseudotumor cerebri.
Anyone used TACROLIMUS? He said it starts working in weeks instead of months. From what I've read, it's really strong medicine. I am scared to take it. It just sits here waiting for me.
I've been untreated for at least 4 years and he says I must get going with treatment to stop progression. The Mestinon is helping a lot. I wish I could just do that.
What do you think?
THanks,
Carly
I take tacrolimus and can't say I have had any side affects. All Meds cause something so I usually just take my Meds and go on. I would hate to see how I was if I didn't .
Good luck to you,
Annette
prednisone and fine again! He is very fortunate ! I just wanted you to know some can be treated sucessfully with a Mestinon! Barb
Has your doctor considered Ivig or plasmapheresis?
You have to decide, but I was afraid of even prednisone until I just had no other choice. I would want to try more mestinon and move up from there, but that is just my opinion.
Can you share some of the side effects your dh had?
Thank you,
Carly
I really know nothing right now. I'm just thankful to finally have a name
for this!!
God bless,
Carly
Mestinon will not stop the progression and immune modulation drugs should help. Finding the right one can be important. If you trust your doctor, you should move forward with treatment. There are many other options, that would be considered safer as well.
You may be hurting your muscles as it is now, so be careful. Especially if you need more and more mestinon to combat the symptoms. It is actually sounding like that may be the case, so you may want to consider treatment, which is not mestinon.
Peace,
TJ
Tacrolimus is a fairly new immunesuppressant in the MG world
but is generally treated well in low doses. Transplant patients are usually on higher doses of immunosuppressants.
Barb, what dose was your husband on for his kidney transplant?
My neuro like to keep the dose at 6mg daily or below to avoid kidney issues.
Hugs,
sherry