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...
Hello, I'm a middle aged woman of 50 years. I have been diagnosed with MG this May 2016. I have had a thymectomy and my neuro have prescribed me prednisone now. I am starting with 10mg a day and will build up to 20 mg a day. With it I am taking Imuran 50 mg and mestinon 360mg every 6 hours, 4 times a day. What I wanted to ask that how long will I be able to see the effects of my medications? and my mg fading? I want to start my job as soon as possible, have a family that depends on me. Please do take time to answer.
I guess that the thymectomy must have not been a total cure for your MG. I was told that it was not an option for me as they will not perform the operation on anyone over 65 due to risk. ( I was diagnosed with MG during July 2015. I had just turned 65 at that time and it was too late by the time we tried medicine first.
You may not feel much effect from 10 MG's of prednisone. I could barely see to drive and so they started me out on 20 MG and then 30 and they toped me off at 40. Twenty MG made a difference as it helped my eyesight to the point I could function again. Thirty and 4o really made a difference but then came some of the side effects like always being hungry and if not careful, adding weight quickly. They don't like to keep you on any higher of a dose of prednisone than possible. The local neuro that I was seeing stated that he was at his limits with the illness and he wanted me to see a specialist.
I then found a good neuro at USF in Tampa FL. She immediately started me on Imuran and then started me on monthly IVIG treatments. I am told that it takes 6 months for the Imuran to take effect. She slowly brought me up to 150 Mg's a day of Imuran. I had no idea that I would have to go 3 days in a row every month for IVIG infusions. ( 4 hours each day ) The cost for this per month is unbelievably high and I'm very glad that I have pretty decent medical insurance through my work place. I plan on working a while yet to see where the illness goes. The plan is to lower the amount of IVIG and spread out the time frame in between infusions to see how I do. You may have viewed my post where I just spent time in the hospital with serious blood clot issues. The IVIG can contribute to this when added with other factors. I now take Xarelto as a blood thinner to try and avoid the clotting.
The bottom line is that MG affects each one of us differently. It takes a lot of time to find what works and makes our lives a little more normal. I try to lead a fairly active life style yet. I play in a band a couple of weekends a month and I travel some with my job. The main thing to remember is that it is a manageable disease. Please keep that in mind and keep a positive attitude. We may never be our old selves again but we still can have a good life.
You are welcome to stay in touch. ( messaging though this site ) There are a lot of good people with valuable information out here.
Steelplayer
Alianazli, what steelplayer mentioned about the steroids is right. 10 mg might be less. But then again the medication is also different for each person as is the disease.
I am so glad you mentioned that the problem is manageable, Steelplayer. it took me years to accept that and relax. Its only now that i have slowed my pace at the age of 45 , that is 11 years after MG having first struck and devastating my life. I have made friends with it and have told it to GO NOW. I am fine without you. I have understood i was to learn things about life and myself because of you , i have and now I let you go. Glad to be here. Meanwhile if you want to share your experiences with others you could join me on miracleme.cpallavirao.com
I just want to insert an add on to my original reply above. I should have included that I have been lowered back to 10 mg of Prednisone a day now that I am on all of the other medications including IVIG infusions. They do not want to keep you at any higher of a dose of steroids than possible. They sure did the trick in the beginning though as it made it to where I could function again.
My current daily medication intake includes:
50 mg of Imuran ( 3 times a day
60 mg of Mestinon ( 2 times a day )
10 mg of Prednisone ( 1 times a day )
IVIG infusions 3 days in a row each month ( 4 hours each day )
This is what is working for me at this time. It's just a question of finding the right combination for each of us.
Good luck with everything. :)
Steelplayer
My quest for what was happening started with an opthalmologist, who referred me to another one, who referred me to a neuro-ophthalmologist.
During this time, other symptoms of mg began so I went to my primary care provider with my list. She wouldn't listen or believe that they were all connected. Neither bloodwork or MRI scored anything. I was left feeling like it was all in my head. I actually found all my symptoms online and was devastated to learn is battling mg.
I was finally diagnosed by the neuro ophthalmologist. The trouble is, he didn't explain my treatment options, tell me what side effects to expect with Mestinon, or warn me of the long term risks of the Prednisone he prescribed. My other frustration is that he chooses to make evaluations and med changes based on my phone conversations with his nurse. I've only seen him once.
I was started on 20 Prednisone, then 30, then added Mestinon, then 40 Prednisone. My speech, swallowing, chewing, neck, muscle weakness, fatigue... nothing improved....except I'm excited to say my double vision went away on Wednesday.
Because so many of my family have diabetes (not to mention the other longterm risks of Prednisone) I want to be weaned off of it. The neuro wanted to bump it up more! Am I crazy?
The Mestinon works but I get so sick!!! Ugh. I've lost 40# since this began because I can't chew long enough, I can't swallow well enough, and my esophagus won't push the food down past mid sternum (per swallow study).
I guess I didn't answer any of your questions....I have so many of my own. I'm reading everything I can get my hands on about managing this without chemicals.
I'll be keeping you in my prayers! We surely need wisdom in all this.