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...
My husband was diagnosed in March - he was lucky to be diagnosed quickly. At first even a small dose of mestinon seemed too much, but he quickly worsened, & couldn't eat, swallow or chew & had a hard time speaking because of his tongue & lost 25 pounds - he couldn't swallow to take his meds to be able to swallow. His neurologist quickly put him on 2 long release mestinon (180 MG tablet) per day. At times even that didn't work too well.
His neuro was kind & scheduled him for his first IVIG in April. We were so elated because he seemed like a "new man", but we were bitterly disappointed when the effects of IVIG wore off in a week.
He had his second round of IVIG on on May 4th - again he was like a new man, but again it is back to square one after a week. It seems like a week of 8 hours a day for infusion plus commute time is a high price to pay for one week of results.
The doctor also started him on two doses of Imuran - but still no improvement. The neuro will up his dose to 3 tablets of Imuran in two weeks.
We are only 3 months out from the abrupt start of symptoms, & are trying to find our way & try to adjust.
We would like to have hope for a better life- but is this as good as it gets? - one good week a month? Thanks so much! - a loving, concerned wife.
His neuro was kind & scheduled him for his first IVIG in April. We were so elated because he seemed like a "new man", but we were bitterly disappointed when the effects of IVIG wore off in a week.
He had his second round of IVIG on on May 4th - again he was like a new man, but again it is back to square one after a week. It seems like a week of 8 hours a day for infusion plus commute time is a high price to pay for one week of results.
The doctor also started him on two doses of Imuran - but still no improvement. The neuro will up his dose to 3 tablets of Imuran in two weeks.
We are only 3 months out from the abrupt start of symptoms, & are trying to find our way & try to adjust.
We would like to have hope for a better life- but is this as good as it gets? - one good week a month? Thanks so much! - a loving, concerned wife.
I noticed you live in Kailua. I have lived in Hawaii 35 years, now living in Kaimuki. Sorry to meet under these circumstances!
Aloha~Marina
I was diagnosed last March. I had a tumor on my thymus. My big symptoms were chewing, swallowing and speech and at first mestinon was all I needed. Had surgery in May and did great all summer until late August/Sept. In fact one day I couldn't swallow my meds or even salivia so went to hosp. where I remained for a week. I started prednisone (60mg) but that can make you worse before you feel better. I had IVIG. I did start feeling much better. After about a month I started Imuran 150 mg and stayed on prednisone. That was in Nov. Now I am still taking imuran and I am weaning off the prednisone down to 20mg every other day and I do not take mestinon at this time. I do feel pretty good. My speech is "normal" and I can keep up with everyone at dinner time lol.
I wanted to let you know that life can get better. It takes time and everyone responds different to the different treatments. The prednisone really helped me a lot but the side effects are not so nice!
I hope your husband finds a treatment that works for him.
Alix
MG takes a while to treat. It appears that your doctor plans to use IVIG and Mestinon as a temporary treatment to keep symptoms under control while waiting for Imuran to work. That is a reasonable way to go--if it works and allows your husband to function. Using prednisone is often faster, but may have more problems with side effects.
As was stated, Imuran can take many months to suppress the immune system from making bad antibodies that are the root cause of MG, so if you think of the treatment in terms of 6-months to a year in getting stability, that might be a reasonable schedule. It can be quite difficult during the wait, but if you see light at the end of the tunnel, it is much easier to endure.
My own path: May 2012 diagnosis; rough summer; improvement in fall with high doses of prednisone and in remission in about 8 months with meds. Then tapered MG meds to lowest effective dose.
As MG is a chronic condition, most of us have to get it under control, and then try to figure the minimum dose of our meds to keep it under control with IVIG as a short term quick fix if things are not working out as planned.
In my case, a year after diagnosis, I am in remission without meds uncertain if MG will return or if I am one of the 15% who get free of it without further meds needed.
If you think of this as a year of getting things under control and then a relatively reasonable and decent to normal future with meds--that is what MOST people with MG experience. However, there are can be problems with meds and with MG coming under control.
The folks on this forum are predominantly newcomers and those who are still struggling to get things under control. Most people who get it under control move on so the forum is not as reflective of success as it is of struggle. I hang around to tell people that live can be normal after the treatment gets things under control. Patience, self-education and a good neurologist are necessary.
Good Luck
I've been treated with prednisone and Mestinon for a little over a year. I was told I would reach maximum improvement on prednisone after six months. At six months, I was better, but no where near where I wanted to be. However, despite what I'd been told, I continued to improve steadily between the six months and now. Recently I've been jogging 3 times per week and cycling twice per week. Except for a hiccup the last few days caused by a bout of vertigo, I'm close to asymptomatic and if you met me you would have no idea I have MG.
There is a spectrum of how well people do with MG, and I am definitely on the very fortunate end. Your husband is in the early part of his treatment and treatment for MG takes time. It is too soon to tell how he will fare, but statistically most MG folks do well. There is definitely hope for a better life.
Take care and come back and talk if you need to feel better.
Be well,
It was very useful, hopeful & appreciated!
http://archneur.jamanetwork.com/article.aspx?articleid=592389
I'm fascinated by these connections between emotions/attitude and myasthenia, of course in some part because they seem to offer a measure of control to the disease I have, but also because the changes that a person makes in these areas benefit them in other parts of life as well (which I can't really say about prednisone despite the fact that I'm glad to be on it). I've done some reading about the systemic effects of stress on the body and you find that a lot of the body's reactions to stress work well to deal with the short-term stressors of a long time ago (such as attacks by wild animals) but can compromise your body's optimal function if left on for long periods when dealing with the more long-term stressors of modern civilization. Your stress hormones have real, measurable effects on other parts of your body including your immune system.
So sorry to hear of your husbands struggle. You have received some excellent advice. We understand what you are going through.
Good luck. Gez
Praying something helps your dear husband consistently.
Carly