I stopped posting in May, the time of my taper. I wanted to pull back a bit and conserve my energy for a time. Here is what was going on when I left . . .
Stanford's Recommendations for the Prednisone Taper from daily 60 mg for last six weeks:
2 Weeks at 40 mg daily.
2 Weeks 40/30 mg alternative day dosing.
2 Weeks 40/20 mg alternative day dosing.
2 Weeks 40/10 mg alternative day dosing.
1 Week 40/0 mg with a follow-up meeting to evaluate progress.
No Immunosuppressant.
The taper continued after the follow-up meeting.
Things went well over a most challenging summer, until I reached the 2nd week of 15 mg every-other day step, around mid-July.
I called my local neurologist, and he said that I should return to the 10 mg Prednisone dose. I thought this too timid, so I doubled it to 20 per day. I should have jumped to the 60 each day dose without waiting for permission.
My symptoms had returned, but they were mild. This was a Wednesday.
Since I had an already scheduled appointment with Stanford on the following Monday, I waited for their recommendation. At that meeting they were not alarmed, but then again, Sanford is not treating my disorder, but merely studying me as a subject. (more to follow).
Dr. Goyal was out on maternity leave. I saw a different neurologist, Dr. Joanna Dearlove. At that Monday meeting Dr. Dearlove upped my Predinsone to 60 mg a day for a month, then the taper begins again. She also introduced Cellcept. She told me to call if I ran into trouble.
By Tuesday night (my day off) I felt reduced symptoms. I began working Wednesday night strong, but finished weak around 3:00 a.m. Tuesday morning.
I awoke Thursday afternoon around 4:00 p.m. and prepared my food for the day, getting ready for work. I became a bit distressed by 6:00 p.m., the time I usually leave for work. I decided to sit and rest. Over the next two hours I made the decision to go to work and changed my mind several times.
Things got worse later Tuesday night. I sent Stanford a fax that included the following:
I’ve had a very bad few days. It seemed things were getting better by Tuesday, but on Wednesday and Thursday symptoms became more severe. My speech is impaired to the point that I cannot communicate. My throat and face muscles are impaired. I can only swallow with great difficulty. My sinuses are frozen. If I hold my nose and blow, I cannot get the pressure to change.
I cannot hack or spit. I must remove the saliva and mucus from the back of my throat by reaching into my throat with a cloth every few minutes. I cannot expel it any other way, not by swallowing or spitting. It is now 1:00 a.m. and I have been clearing my throat with cloth for the last 4 hours. I have soaked 5 cotton undershirts since 7:00 p.m.
I know I should have gone to the ER and will do so in future. I should have gone to the ER Thursday night around 11:00 p.m. This would have been 15 hours earlier than I did.
I called to confirm that Stanford received the fax before noon on Friday. I did not hear back from Stanford until 10 a.m. Monday morning, while I was hooked up to four tubs in the Orthro/Neuro Unit of O'Connor Hospital. It was Dr. Dearlove's research assistant. I could not speak, but I recall her asking "what I thought had triggered this crises." Had I the ability of speech at the time, I would have asked "why? Are you on a publishing deadline. I handed the phone to the RN.
Dr. Dearlove called back an hour later, leaving a voice message apologizing for the mix-up that prevented a more timely response to my call for help and to call them to arrange another appointment to continue my treatment.
I went into O'Connor Hospital at 4:00 p.m. last Friday. Since I began to aspirate, they inserted something called a "NG Tube." BTW NG Tube--not as much fun as they first make it sound.
I had a 5-day regimen of IVIG, ending last Wednesday. There was improvement each day. It is really amazing how quickly it produced substantial results. I was discharged on Wednesday afternoon.
By Friday evening my symptoms were mild. Since I wanted to work to get moving, and since I felt strong, I drove the cab over the weekend.
I am taking it easy. I do know that some of my good feelings are coming from the higher dose of Prednisone.
O'Connor hospital took wonderful care of me. I wonder how long before I stop weeping like a schoolgirl every time I think of what they did for me in a short period of time? It is quite embarrassing, and it is dangerous too. I do not want to become dehydrated again.
Here are the before and after pictures. Before: Sunday July 27th -- After: Monday August 4th
For those of you having trouble noticing a qualitative difference between the two images, the after picture is the one on the right.
That is Dave Bogart in the background, one of the top nursing supervisors in the Ortho/Neuro Unit at O’Connor Hospital. Dave and the others took wonderful care of me during my 5-day visit. It made all the difference. The photo was taken 24 hours after Dave inserted the NG Tube. If you even need a NG Tube, it is not really that bad given the necessity. It is amazing what you are able to do if you want to survive.
-Mark-
P.S.: I do not blame Stanford for this MG crises. I knew the risks and understood my options when I accepted their recommended taper, largely from what I learned in this forum.
Still I am dumping Stanford. I am going with the neurologist I met in the hospital, Dr. Rual Guisado. Even before he knew I work nights and live alone, he understood the logistics issue with Stanford.