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...
So I was taking 20mg prednisone and has a relapse after 15 days of taking and got no improvement. My neuro has told me to for a plasma exchange and has upped my Imuran. I am currently on 10mg Prednisone and Mistinon 5 times a day... Please help me in guidance. What should I do now? I told my neuro that I am a poor women and cannot afford plasma exchange after I've spend almost 700,000 on Thymectomy in June. I am so depressed right now. Please help me... I have no hope left. When am I going to see the effect of Imuran? I do job as a teacher. If I lose it I will be homeless. I have kids to feed and they are school going. I cannot end my life. Please answer my questions. Should I go to a new neuro? She should've had prescribed me Cyclosporine?
Remember several things have to happen to get MG under control. Your blood is filled with bad antibodies churned out by your immune system. The antibodies not only block but destroy muscle receptors.
So prednisone at high enough doses will stop the immune system from making the antibodies (or at least drastically reduce the amount produced), but that takes some time to happen.
The antibodies already in your blood will have to disappear, and that takes some time too.
By the time most folks are diagnosed with MG, about 80% of their muscle receptors are already destroyed. They grow back if the antibody attack is relieved, but again that takes some time too. One of the best things about MG is the receptors do grow back with treatment and so full recovery is always possible with control of the antibody production.
The fastest way to get MG under control with prednisone is to take a lot early and then wait for the results -- in my case nearly 5 months (it took longer as I too was started low and gradually increased as the low doses didn't work or took too long).
After prednisone stops ones MG symptoms, then it is time to taper the dose very slowly to find out the minimum effective dose (and probably begin an alternative drug to prednisone).
IVIG and PLEX (blood additives and blood cleaning) are probably the fastest way to get MG under control for many folks. However, as both are outrageously expensive (think $20,000 per treatment) and have to be repeated every month or so, insurance companies reserve this for folks who other treatments fail and for the first few months or year of MG while the other longterm drugs are working.
Right now, I am in remission. However, when MG comes back, I plan (with my neuro's OK) to hit it immediately with 60/mg per day prednisone with the expectation I will be improved in a month or so and get through that month with as much mestinon as needed (I took 60mg of mestinon every 2.5 hours during the time I wanted to be active, and less when I could chill). That much mestinon did make it so I could function, although no where near 100%.
I chose not to take IVIG or PLEX during my first year, although it was available to me through my insurance and recommended by the doctor, because I did not want to tie myself to a hospital/clinic with monthly treatments, when I was quite sure if I persisted with the prednisone at high doses, it would work. With a dozen or so mestinon per day I waited for the prednisone to work and it did.
Prednisone is inexpensive, effective, but long term it has some side effect that can be troubling. That is why people try to taper it to the lowest dose that works.
Mom took it at about 10 mg per day for 25 years for polymyalgia rheumatica and it made her life tolerable, although it likely gave her diabetes and cataracts before she passed away at 91 years old from heart problems unrelated to the prednisone.
I am having my cataracts removed this year that were undoubtedly speeded along by my year of prednisone, but at age 70 probably would have had them anyway.
Some advice: MG is a terrible disease when we first get it as it has already progressed greatly before we know about it. It takes time to get it under control, but most folks do get it under control and get back to living their lives. The first year is worst as each person has to figure out the treatment that works. That said, there are some folks who have much more difficulty with MG than the average person, sometimes due to inability to tolerate the treatments, some by other complications that get in the way and some who seem to have a particularly stubborn type.
The vast majority of folks who have come here to this forum when newly diagnosed, do figure out a treatment and then disappear from here back into the regular world of folks with chronic diseases under control. Remember that MG is treatable, and the damaged parts created by MG antibodies are all able to grow back to normal again with treatment. The bad side-- treatment is lowering our immune system production of all antibodies leaving us more susceptible to infections, viruses etc. So in the long run our goal is to get rid of most MG symptoms while keeping some immune system function -- an ongoing balance that will be with us the rest of our lives in most cases.
Good Luck Russ