First, I want to thank Mike (pingpongman) for introducing me to this helpful document on the treatment of our disorder. It answered so many of my questions. It also has empowered me with the knowledge that will allow me to take a more proactive role in my treatment.

The docuemnt is entitled Myasthenia Gravis: A Manual for the Health Care Provider. It is published by the Myasthenia Gravis Foundations of America. It is in PDF format. You can read it online using a Web browser, download it and read it offline with an Acrobat Reader, or you can have it printed and bound. I had mine printed. I will be taking it with me to my next appointment with my neurologist. I'm even going to put the PDF file on a thumb drive and give it to my doctor.

http://www.myasthenia.org/LinkClick....w%3d&tabid=125

While the document is intended for healthcare professionals, there is much in it that can be helpful to us. None of us will read it from cover to cover or understand the more technical aspects.

I found Section 2.8 Treatment of MG to be very helpful, particularly Section 2.8.1 Cholinesterase Inhibitors (Mestinon) on page 17, and Section 2.8.3 Corticosteriods (Prednisone) on page 19.

I learned a lot about Mestinon and the proper dose schedule. With the knowledge and assent of my neurologist, I started experimenting with the times that I take Mestinon. I was prescribed two 180 MG Mestinon Timespan tablets a day, one every 12 hours. I was also prescribed three 60 MG Pyridostigmine tablest a day (generic Mestinon). The only instruction was "take 1 tablet by mouth 3 times daily." My assumptions was one every eight hours, but it does not necessarily need to work this way.

I learned the following in Section 2.8.1 Cholinesterase Inhibitors

No fixed dosage schedule suits all patient. The need for cholinesterase inhibitors varies from day to day and during the same day. Different muscles respond differently--with any dose, some mussels get stronger, others do not change and still others become weaker. The drug schedule should be titrated to produce an optimal response in muscles causing the greatest disability.

My worst symptoms are my face and jaw muscles. Sometimes I cannot speak. I have great difficulty chewing. I also have great difficulty drinking. I changed my Mestione schedule to concentrate on the waking hours. Although I take one of the Mestione Timespan when I go to bed, I concentrate the others in a more compressed time-frame during my waking hours.

The early results of changing my Mestione schedule seem to be good. I could speak louder and longer. The severity of my face and jaw symptoms were greatly reduced. It was very much easier to eat and drink last night. It was the best it has been in three months. I could actually make the kissing sound with my lips, to the delight of my cats. I did not feel compelled to help my jaw with my hand. It stayed closed by itself. This might not be entirely due to the change in my Mestione schedule.

I believe that much of my improvement is due to the addition of the Prednisone. But if my symptoms continue to be less sever than they have been over the last three months when I was diagnosed, I will need to find the proper Mestione schedule for me going forward.

But as the quote above suggests, some muscles did become weaker. This is the first time that I have experienced weakness in my arms and legs. It was not too bad, but I had difficulty lifting my 20-pound camera bag to my shoulder. I basically needed two hands to place the shoulder strap. I also had a bit of difficulty getting out of my taxicab and up into my van. I had to exert a bit of effort to climb a few stairs.

I did not have any vision or breathing issues. I can do a 28-count on one breath. I did "feel" my eye muscles, and it took a little more effort to keep my eyes closed than it did to keep them open. This, of course, is a classic symptom of MG.

I believe this might be due to the more compressed Mestione schedule. I plan on dropping the evening Mestione Timspan for a few days and see if there is any improvement in my leg and arm muscles. I will be seeing my neurologist on February the 3rd, so I have some time to gather more data.

More may not be better. Timing is important too. You have to be sure you do not take too much Mestione in too short of a time period: "Acute overdosage my cause cholinergic weakness of respriatory muscles and apnea." Read Section 2.8.1 for full details.

Note: Before you try and change your Mestione schedule talk to your doctor.

I also learned a lot from Section 2.8.3 Corticosteriods

My doctor prescribed Prednisone on January 15th. Since it was prescribed between appointment, I did not have a chance to discuss it with him. The preferred form of communication with my doctors between appointments are faxes. I faxed my neurologist one day about my worsening symptoms, and he called in the Prednisone prescriptions to my pharmacy the next. He then had his medical assistant leave me a voice message about the new prescription. I sleep during the day and usually turn off my phone. At the time I knew nothing about Prednisone. What a wonderful country we live in, send a fax and get drugs. I'm planning on sending my doctor another fax telling him I have have a headache, and see if he call in a prescription for OxyContin or Vicodin.

My assumption was that I would need to use the large doses first prescribed of Prednisone for a long period of time, an unpleasant prospect given the long-term side effects. But according to the MGFA treatment recommendations, this may not be the case:

The most predictable response to prednisone occurs when treatment begins with a dose of 1.5 to 2mg/kg per day. This dose is given until sustained improvement occurs, which is usually within 2 weeks. The dose is then decreased over many months to the smallest amount necessary to maintain improvement, which is ideally less than 20 mg every other day.

I do not believe my neurologist knows about the MGFA treatment recommendations. He prescribed me 60 MG of Prednisone each day for 30 days. He did not tell me about decreasing the dose overtime to the smallest amount necessary to maintain improvement. I think I will have "sustained improvement" long before the 30 days.

-Mark-

I disagree with 2 statements concerning Prednisone dosage:
-the maximum dosage for a treatment of at least several weeks should be 1mg/kg/day, 1.5 to 2 is far too high...
-The starting dose should be low and increased progressively every couple of days in the absence of adverse reactions (that was my case with 5 mg/day and I was lucky to be an in-patient at that time) until the dosage of 1mg/kg/day is reached.
Maurice.

Maurice,

I think the MGFA addresses this in the next paragraph following the one I quoted above:

An alternative approach favored by some is to begin prednisone with 20 mg/day and increase the dose by 10 mg every 1 to 2 weeks until improvement begins. The dose is maintained until improvement is maximum and then tapered as above.

One approach is to start high, the other is to start low. I do not have enough knowledge or experience to evaluate either approach. Given the nasty nature of steroids the, the lower level approach, particularly if it achieving the desired results, would seem the better method.

My concern is that I was prescribed a high dose for 30 days. In addition, I was not told that the high dose would diminish over time.

I have had only one appointment with my neurologist and that was in mid November (moved up from February after symptoms returned). I was diagnosed by my young primary care doctor in early November and refereed to a neurologist in the medical group. I had a terrible onset of symptoms in the middle of September. At the time I though it was a sinus infection. I went to the Urgent Care facility at my medical group as a self-paying patient on a Saturday. My symptoms were severe. I could not speak. I had great difficulty swallowing. I sounded like a stroke patient. The Urgent Care doctor examined me for 5 minutes, listened to my lungs and told me that she could only hear a sight congestion. Nevertheless, she prescribed antibiotics.

Of course, the antibiotics did not work. After 6 days I was only worse. I was dehydrated, it would take me 20 minutes to down a glass of water. I had not had anything solid to eat for 10 days. I was sustained by The Ultimate Meal, a very good nutritional supplement. For 48 hours during this period I got no sleep. Mucus would collect in the back of my throat every few minutes. I could not hack it up and out. I had to reach in with a cloth and "grab it." I could easily soak one of my large cotton undershirts in 30 minutes. This went on nonstop for 18 hours at one point. I was absolutely exhausted.

At the time my only options, as an uninsured individual, was to either go back to the Urgent Care facility at my medical group, or seek help at an ER. Our Urgent Care facility at the San Jose Medical Group is available 8:00 a.m. to 8:00 p.m., 365 days a year. Or I could have gone to the ER at the Valley Medical Center, our local county hospital. In my mind VMC was not an option. I was looking at possible 4 to 12 hour wait in the ER. We pickup a lot of fares in the various ERs around the greater San Jose area, and I knew what I would be in for if I choose this option.

I decided to go back to the Urgent Care facility, but it was already 6:00 p.m. on a Wednesday and I could not speak, nothing. I think most of us know how frustration it is to be unable to articulate our symptoms to our doctors. I knew it would not be possible for me to articulate any part of my situation to the doctor. I was absolutely exhausted. I decided to type out my situation and symptoms, print it, and take it with me to the Urgent Care facility. By the time I was done it was already 7:30 p.m. and they would be closing soon. I decided to give it one more night and go in the morning. If I lasted this long, I could last another 12 hours, probably many a famous last words. But I did get a bit of sleep that night and my symptoms were somewhat less in the morning. It was the first real sleep I had in days. I decided not to go the the Urgent Care facility. Over the next few days I improved. I would be seeing my primary care doctor two weeks later, so I decided to wait. I steadily improved before that visit. I still believed I had a sinus infection and it was over.

It was at the already scheduled visit to my primary care doctor that he suspected a neurological disorder after he listened to my story. Remember that he never saw me while I was presenting symptoms. I thought he was crazy. To me neurological disorder sounded like brain damage. My intellect was intact, such that it is. My reflexes were sharp as every. He order the blood test for the antibodies, and I think we all know how that goes--Myasthenia Gravis. I did a quick Internet search when I got the phone call with the news. One of the first things I read was there is "NO CURE." Of course, being a sharp witted individual, I interpreted this as "FATAL." I turned off the computer. It took me a few days before I had the courage to research it further. My anxiety drooped as my knowledge of MG increased. MG is bad, but they are many, many other things that are far worse.

I apologize if I am sounding pollyannaish. I know, at least to date, I am quite lucky. I know that many of you, if not most of you, are having a much tougher time than I am having. I've been very luck so far. My young primary care physician diagnosed me much earlier than might have otherwise happened. This can only be a good thing going forward. My mobility is good, if it were not, I would be unable to earn a living. The earlier bouts of double vision have not returned. I can tell you from personal experience that a cab driver who drives one-handed, while covering an eye with the other, does not instill a lot of confidence in his passengers. At one point I considered an eye patch, but didn't want to hear the pirate jokes.

The earliest appointment I could get with a neurologist was in February. At the time I was completely symptom free. But my symptoms began to return a week before Thanksgiving. I was very concerned that I would not be able to take advantage of the holiday taxicab business. It is our busiest time of the year. I contacted them by fax, their preferred means of contact between appointments, to let them know of the return of symptoms. Without another examination they prescribed three 60 MG Pyridostigmine tablets, generic Mestinon. They also moved up my my fist visit to the neurologist. I saw a neurologist just after Thanksgiving. I responded rather quickly to the Pyridostigmine . In fact, I felt improvement after the first day, but this did not last.

My neurologist then prescribed one 180 MG Mestinon Timespan tablet a day at bedtime. I went to pickup the prescription, but it was $240 for 30 tablets for a self-paying patient. I could not afford it at the time. I had lost 10 days work in the earlier episode, so I muddled through with the Pyridostigmmine for the rest of the holiday season. I was able to work 6 days a week, 12 hours a day until after New Years. I was told that a possible cause might be a tumor on my thymus and I would need it removed. My neurologist ordered a CT scan with contrast. I was actually rooting for a tumor. In my ignorance, I believed it was the cause, removing it would solve all my problems. Take it out, no more symptoms. I now know this is not the case. It can take 3 to 12 months for symptoms lessen, and it is no guarantee that they will not return in the future.

At that point I was resolved to get healthcare insurance, no matter the cost. I knew this would be possible due to the Affordable Care Act. Living in California, instead of a red state opposed to the ACA, it was a relative easy process. I had numerous companies and policy choices. I got a Platinum Plan from Blue Shield. Without premium support, the price would have been about $1000 a month. With premium support, I am paying $510 a month. This plan has no deductibles, very low copay costs, $20 for a primary care visit, $40 for a specialist, and only $150 for an Emergency Room visit. My Blue Shield policy will also pay 90 percent of hospitalization. I also knew that if I needed surgery I would need one or two weeks off of work, more if there were complications, so I worked extremely hard during the holiday season.

In the fall of 1998 I returned form a 36-hour tuna fishing 50 miles off the coast of Monterrey. Some time schools of albacore tuna travel through warm bands of water from Mexico. I did not put my flay knife properly into its case. The small tip was protruding through my shoulder bag. When I swung the bag into my apartment, I cut dash in my thigh. It was 3:00 a.m. in the morning. I needed to go to an ER. I got 4 stitches and a tetanus shot. The price: $1,200. They had a charge for everything. My favorite was $385 for the trauma tray. This was the tray that stored the stitching equipment. I also had two doctors' charges on this bill, one for the doctor who did the work, and the other for a doctor who stopped by to hear about my tuna trip. He should have paid me for that story.

I did get healthcare insurance after this event. There was a California sponsored program. I got a Kaiser plan and held it for 4 years, until the Dot Com Bust. After that, I could no longer afford it. During that 4-year period I paid something like $10,000 into the system and only used the policy once for a physical. When times got better, I tried to secure healthcare insurance again, and got turned down every time. Apparently, fat, 50-year-old taxicab drivers were not a desirable demographic for the healthcare insurance industry.

I digressed here because I want to encourage anyone who does not have healthcare insurance to get it, even if you live in a red state and have to go to the Federal Exchange. There are many levels of policies, Bronze, Silver, Gold, and Platinum. You need to evaluate each to see which makes the best financial sense. With or without premium support, these policies are affordble. For me a Bronze Blue Shield Plan would cost $500 without premium support, $50 with premium support.

Open enrollment closes in March. If you miss it, you will need to wait until the next open ennoblement period. Having quality healthcare coverage has removed a massive burden off my shoulders, both financial and mental. I feel like I have some control over my life again. No more policy denials for any preexisting conditions, not even Myasthenia Gravis.

I got plenty of rest after the holiday season, but I started to have increasingly more sever symptoms in early January. Now having healthcare insurance, due to the Affordable Care Care Act, or as my conservative friends call it, the Obama Care Train Wreck, I now have a Platinum Blue Shield policy. Prior to this I was turned down for healthcare every time I applied in the previous 10 years. The irony is that until this recent incident, I had not needed any medical services. I would have been paying into the system and taking nothing out of it for many years had they sold me a policy. Now I could afford the Mestinon Timespan and get a proper CT Scan. But even taking two Mestinon Timespan and 3 Pyridostiginne a day, symptoms returned, another fax and another prescription, this time for Prednisone.

Returning to the actual point of this post (sorry about that, but it has been a long time since I could communicate with people who can relate to my situation), I am concerned about the Prednisone, paralytically the amount and time I will be taking it. Fortunately, thanks to Mike bringing the above document to my attention, and the fact that I already have an appointment with my neurologist, I will be able to address these concerns in person, in stead of by fax.

To date I weigh (and dropping) 235 pounds or 106 kilogram. That means that I was prescribed about 1.8mg/kg/day for 30 days. Without the knowledge that I have learned here, I would not have known there was an issue. I would have simply complied to the doctor's decision. Now I can question it when I see him on the 3rd. If he does not like being questioned, perhaps my next doctor will. I've been taking this dose since January 15th and I have responded well. My symptoms are greatly diminished after only 11 days, improving dramatically in the last 48 hours. I know it is mostly the Prednisone, but if feels good to feel good again. I do know that with MG this could change overnight, but if it does, I will deal with it.

-Mark-

Hi Maurice,

I have been on Prednisone for 11 days at the 1.8mg/kg/day level. My next appointment with my neurologist it in 7 days. My symptoms are greatly reduced. My question is, should I fax him and begin the movement towards the maintenance level tomorrow, or should I keep the current schedule and talk to him in 7 days? In other words, how much difference will 7 days make?

-Mark-

Hello Mark,
Since you “survived“ the initial high dose of Pred, I would not change anything till your next appointment, 7 days more do not make any difference.
If you want other references to discuss with your neuro, you may see
http://neuromuscular.wustl.edu/mtime/mgrx.html
One other thing, Time span is usually given to patients who have difficulties after the night sleep because it has a longer period of action (12 hrs versus 4 hours), you may think about that to reduce your expenditures.
Maurice.

Thanks Maurice. I've been actually enjoying the Preds. They make me feel like I can hit home-runs for the New York Yankees.

On page 17 of the MG Manual I read that a "timed-release tablet of pyridostigmine is useful as a bedtime dose for patients who are too weak to swallow in the morning. However, its absorption is erratic, leading to possible overdose and underdose and it should not be used during waking hours." (emphasis added).

After reading this, and given that I started to experience some weakness in my upper body, I decided to forgo the Sunday evening dose last night, sticking to the three 60 MG Pyridostignine tablets during my waking hours. Unless it is my imagination, my upper-body muscles feel a bit stronger today.

This issue is on my list to discus with my neurologist next week.

BTW, what are the likely effects on my body when we start to decrease the Pred dose to maintenance levels? Is there anything I can do now to mitigated these effects? I can tell that the Preds have elevated my mood, perhaps even a bit manic. Will I crash and burn when when the dose diminishes?

-Mark-