[miasmom@comcast.net]

New to forum: My name is trish My 55 year old partner was just diagonosed with Mg 2 weeks ago, it seemed to progress rapidly. He was just put on Mestinon and dosages were not lasting long enough in the past 2 weeks. He is choking, troubling swallowing, chewing and his head and arms aver very week, He is out of work now and in the hospital. Neuro is putting him on high dosages of predisone. We live in Nh and was wondering if we should go to boston?

Has anyone had experiences with pred?

[cait24]

I would discuss with your neuro the possibility of plasmapharesis. Try this website, it has a lot of good info on MG. http://www.mayoclinic.org/diseases-c...s/con-20027124. I always suggest to new MG patient that they see a neuromuscular specialist at a large teaching hospital. They are up on the latest protocols and treatment for MG.

Prednisone has its good and bad side. The good side is that most MG improves very fast, especially breathing issues on prednisone. There are a lot of bad side effect being on prednisone long term. Different people tolerate it differently. Some MGers are on it for years and tolerate it well, some can not tolerate it all.

The first time I was on prednisone I tolerated it very well and thought it was a wonder drug. The second time I had the exact opposite experience and had every side effect in the book.

Be careful of the swallowing issues. Can he eat and get his pills down? Is he having breathing issues.

Prednisone is fast acting. There are other immunosuppressant that take longer to work and many MGers start on both at the same time, such as cellcept and imuran. Once they kick in they are weaned off prednisone.

Let us know how he does. Good luck
kathie

[miasmom@comcast.net]

Im so new to this Im not sure if I am posting correctly. Is the predisone caussing a lot of syliva or is it the desease itself?

[Plantagenet]

It is more likely to be the Mestinon a side effect of Mestinon can be an increase in the production of saliva.

[miasmom@comcast.net]

Thank you I have so many questions, and truly doctors are just scientific they dont live the day to day happenings of Mgers(I learned that term here)lol. My boyfriend knows its a lifelong illness yet he just leaves it up to me to research and feed him what I find, i truly dont mind. I just want to know what to expect from others who have it or know about it. This is the begininning of a long journey and I am his lover,friend and most of all caretaker.

[neutro]

Hi Trish,
I'm very sorry to what happened to your partner. It is very similar to the MG onset I experienced when I was 68.
Could you tell us what are his daily dosage for pred and Mestinon?
Cait is right, false routes when swallowing could be dangerous so you have to adapt your (at leat his) meals to what he can easily chew and swallow. Take more meals in smaller quantities in order not to fatigue the muscles involved in the swallowing process. For the same reason, avoid talking when eating.Avoid products like salad which require much chewing for little profit. I found raviolis easier than spaghetti. Use the mixer/blender for meat or vegetables and use spices to improve the taste of such food. Liquid should be sipped by small quantities and jaws should be 2 to 3 inches close to the chin, that opens the throat to the maximum.
Calcium and vitamins D3 should be taken when pred is prescribed, eat one banana per day to get more potassium.
Sleeping problems, glaucoma are possible side effects with Pred.
Do not hesitate to ask questions, many people will be happy to share their own experience.
Take care,
Maurice.

[miasmom@comcast.net]

Thank you Maurice, He is taking 80mg of pred in the morning and 60mg of mestonin every 3 hours. He does chew very slow and he takes about an hour to eat his meals. He is taking Boost. Thank you for the vitamin advice. I do watch him constantly and tell him not to eat when I am not home. Thank the good lord I am retired on social security disability from a failed spinal fusion and I am home most of the time.

Do MGers ever go back to work. He is 55 and not quite ready to retire. He is becoming bored so I have recommended he go to the gym and do some strength exercises. I would have to drive him of course. His best times are in the morning, later in the day his eyes begin to droop and he has burred vision.

[southblues]

I work. I am still weak, but I am able to do an easy job.

[miasmom@comcast.net]

Originally Posted by southblues

I work. I am still weak, but I am able to do an easy job.

How long have you had MG? If so what are you taking for meds?

[southblues]

I was diagnosed two years ago. I started with bad symptoms three years ago.

I take Cellcept 1,250 mg per day.

I take mestinon (generic) 60 mg up to 5 X per day.

My original symptoms included:

Falling
Shortness of breath
ptosis
double vision
difficulty speaking (hoarse or non-existent voice)
difficulty swallowing
nightmares (probably because I couldn't breathe)
fatigue

My symptoms now are:

ptosis (not as severe until night)
weakness in my legs (but I don't fall over)
shortness of breath on exertion
fatigue

I'm by no means totally well, but my condition has improved so that I can walk, talk, and eat, and breathe. I will admit that I walk kinda funny....