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-