[Panorama]

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.

[suev]

Wow - you've been through a lot! Thx for the update and I hope you continue to improve over the next several weeks. Take care.

[southblues]

Mark, I'm glad to see you back on the forum.
And by the way, you look much better without tubes in your nose.

I hope you continue to do well. I am sorry about your crisis.

[cait24]

So sorry you had to go through all that but glad you got the IVIG treatment you needed.

MG can turn on a dime. 7 weeks ago I could function and work full time. On 6/19 it hit 90 degrees here and I ended up in the ER with shortness of breath. I got large dose solumedrol (steroids) and no IVIG and was discharged 3 days later on 80 mg prednisone. 2 days later back in the ER again with shortness or breath, more steroids, no IVUG or plasmapharesis, discharged again on high dose steroids. I begged for plasmapharesis or IVIG and neuro refused. New neuro and 7 weeks laters, still on short term disibility, cannot function, work or leave the house. New neuro finally faxed script for IVIG which probably will not start before next Monday if I am lucky.

I am glad your hospital knows how to handle MG. Getting the right treAtment as soon as possible is half the battle. How high did they bump your steroid dose back up?

The solumedrol dose relieve the immediate crisis breathing issues, but now I am stuck for 6 more months trying to wean off prednisone again. The prednisone has me so sick and weak. I am swollen like a blow fish, have loads of black and blue marks and experienced internal gastric bleeding. At this point I think the meds are worse then the MG.

I am glad you were able to get back to work so fast. I am hoping IVIG will allow me to return to work or I will have to apply for long term disibility. Please keep us posted with your progress. Are they going to put you on an IVIG maintenance dose now?

thanks
kathie

[Panorama]

Kathie,

Originally Posted by cait24

MG can turn on a dime. 7 weeks ago I could function and work full time. On 6/19 it hit 90 degrees here.

Working nights, I am able to avoid the heat. We have also been experiencing unseasonable mild heat. On the Monday before the crises, I was out and about in the noon time temperatures. It was only 80 degrees, but it felt oppressive. Later in the week we hit 100 degree temperature beginning on Thursday and projected to go forward over the next seven days.

On Friday afternoon I open the door from my 70 degree apartment to go to the ER into 100 degree heat. It hit me like a ton of bricks. My friend's car was not air conditioned.

Originally Posted by cait24

How high did they bump your steroid dose back up?

A week before the crises, I increased the dose from 15 mg every other day to 20 every day. I had the Stanford appointment in a few days. They raised it to 60 mg.

My new neurologist wants this level for a few weeks, then we begin the taper again. Like many here, he prefers the dropping 6 percent increments. He also want to infuse once a month for the next 3 or 4 months to give the Cellcept time to start working.

[/QUOTE]

[AnnieB3]

Mark,

As I said before, I think Stanford's recommendations are rather naive and do not work for everyone.

The every other day dose is still at 40. At that point, your adrenals are not working well and you can have an adrenal crisis even on the alternating 30, 20, 10, or zero days.

Everyone is different and withdrawing from steroids is more of an art form. No one should strictly follow an algorithm! And staying in touch with the prescribing doctor is essential. You have to pay attention to even the subtlest of symptoms.

It's quite possible that an adrenal crisis might have precipitated an MG one.

I said this in your other post, but it's worth repeating here. Do not "go to the ER" if you are on the verge of a crisis. DIAL 911!

Please take it very easy. Stay the heck out of the heat. Do not become overheated for even a minute. If you do, have a handheld fan to cool you down or go stick your head in a freezer! Cool packs work well, but you have to cool down your entire body. Some of us take cold-ish showers.

I also hope you will follow up with a pulmonologist, not only a neurologist.

You really do need a responsive neuro, especially during a crisis or med taper/changes.

Has anyone told you to take calcium and vitamin D while on Pred? Any other advice, such as some sort of omega-3's while on it?

Keep resting and taking care of yourself. Don't overdo it! I'm glad you have a neuro who can take care of you.


Annie

[Panorama]

Originally Posted by AnnieB3

Mark,
It's quite possible that an adrenal crisis might have precipitated an MG one.

Annie,

It is interesting that you bring up the adrenal thing. My doctors though they saw something in my chest CT scan and order an abdominal CT scan in January. It showed an enlarged adrenal gland, but they told me not to worry about it.

-Mark-

[AnnieB3]

Not to worry about it? Uh, get a 2nd opinion from an endocrinologist and make sure you have the films/DVD with you.

Good grief, Mark, as if you aren't going through enough!


Annie

[Panorama]

Originally Posted by AnnieB3

Good grief, Mark, as if you aren't going through enough!

There is still one more part of the story. Check out the thread about Summertime Stress.

http://neurotalk.psychcentral.com/thread207855.html

-Mark-

[Panorama]

Originally Posted by AnnieB3

As I said before, I think Stanford's recommendations are rather naive and do not work for everyone.

It pains me to say this, but I felt special being invited to Stanford. I liked saying "my Stanford Neurologists." Plus they are the best looking neurologist I have ever seen. Not the first time I was swayed by a pretty-skirt from a prestigious university.

-Mark-