Symptom Update
 

I will be seeing my neurologist on Monday morning. I've been on a high dose of Prednisone for three weeks, and have been tolerating it fairly well. My current level is 60 mg per day, or 1.8mg/kg/day. My normal primary symptoms centered on my face, mouth, tong, and jaw muscles. Speech was very labored or nonexistent by end of the day. Symptoms were much less sever after sleeping. My jaw would drop and I would finding myself aiding it with my hand. I would also assist chewing with my hand. Eating was possible, but it took time, as did drinking. After eating I would have mucus collection in the back of my throat, as I did late into the night around the time I would go to bed.

My neurologist will soon begin to taper the Prednisone down to maintenance levels. After the Prednisone regimen over the last 3 weeks things have markedly improved.

• I can eat and drink more freely, increasingly better each day. Last night I could eat with gusto. It's been months since I could eat without difficulty.

• I no longer have the mucus issue at night, or following meals.

• Before, a belch or burp was shallow and not satisfying, now they are deeper and more satisfying.

• My jaw muscles is much stronger. I no longer feel compelled to help keep my jaw closed with my hand or aid me when chewing.

• I have more strength in my tong.

• Better yet, my speech has markedly improved. I can speak louder and longer, but still become fatigued if I overdue it. The difference now is that I only have to rest a few minutes for my stronger speech to be restored.

• I can do a 30 count on one breath.

No vision issues. My distance and night vision is excellent. No more double vision since the September severe MG event. After that event, I found that I needed my reading glasses more. I needed them to read the computer screen in the taxicab. I thought this was normal with age. I am using 1.5 strength. After the Prednisone I no longer need the reading glasses to read the taxicab display.

But I do have additional symptoms that I did not have before. I know this may be due to the Prednisone, Mestinon, the every changing nature of MG symptoms, or a combination of all three.

• My lower leg muscles are weaker, but not that bad. I need a little extra effort to get up into my van, or down into my cab. It takes a bit more effort to climb even a few stairs.

• It is much more difficult to lift things above my waist. Before I could swing my 20-pound camera bag by the shoulder strap from the floor onto my shoulder. I cannot do this now. I can lift it normally from the floor to my waist using the hand grips. I need two hands, or place it on a table and climb into it before accepting the weight. Once loaded on my shoulder, there is no problem totting it.

• The neck muscles in the back of my neck are weak. It takes effort to keep my chin off my chest. I find myself assisting my neck by placing my hand under my chin to keep my head upright. This is more pronounced when walking, sitting straight up at my desk or in my van, but noticeably less to nonexistent when sitting the the cab. The cab seat leans back a bit. If I lean back in my desk chair, it is much easier to keep my head upright.

Any observations will be appreciated.

-Mark-

It sounds like you had a great response to prednisone, with minimal bad side effects, considering the dosage. Most find, however, that symptoms begin to return with a lowered dosage, especially if no other immune suppressing drug is added into the mix. You may want to discuss that with your doctor.

Unfortunately, even with treatment, you will likely never be 100% again. Only a teeny fraction ever achieve that. I know of one person, personally, and she had MG as a child and it went away in her late teens and has never returned. You will need to learn how to adapt to the day to day changes while working to find the right combination of drugs and adaptations to make your life as fulfilling as it can be. Remember, this takes time, and trial and error. There is no magic formula.

Good luck!

Is Imuran and cellcept the two other drugs to be considered?

It is the neck thing that concerns me the most. It is a bit painful (strained), not bad, but annoying that one is compelled to hold it up with a hand.

-Mark-

Yes, those would likely be the ones to consider. Cellcept works a little faster, and has less side effects, IMO. Imuran needs some pre-testing to check for some kind of blood marker that would indicate intolerance prior to beginning it.

Yes, the floppy neck is the pits. I've found that it comes and goes, so hopefully you will find it eases with time (but will probably return.)

Please watch the rate at which they lower the prednisone. They lowered mine too fast the first time and I got very sick. Don't be afraid to call the doctor if you feel really bad while weaning of pregnisone. It may be the prednisone and not the MG.

good luck
kathie

I was pleased that it was not so bad driving the cab last night, I think because the seat leans back a bit. I thought I might need to lash my head to the headrest with a bungee cord (only kidding). :)

When I was a paperboy in the 1960s, one of the people on my rout had his head on his chest. It was like his head fell down, turned left, and his left ear was touching his chest by his heart. I never knew the cause. Is it possible it was an extreme case of MG?

-Mark-

Has anybody considered the possibility that August Rodin's master work "The Thinker" was not a sculpture of a smart guy, but rather an undiagnosed Myastehenia Gravis sufferer?

http://www.losgatosphoto.com/thinker.jpg

-Mark-

Hi Mark,
I´m confused about your Pred dosage: you write that you are on 60 mg per day but in an other thread, didn´t you say you weigh about 100 kg? That should make 60/100=0.6 mg/kg/d...?
BTW, your symtoms are almost identical to those I had when MG started in 2007. I was treated with 1 mg/d/kg for several months and slowly tapered during 18 months to 5 mg/d for an almost normal life till I relapsed due to a trial to 4 mg/d combined with a pneumo shot which sent me 2 years back. I repeated the whole process with less success as I´m now on 7.5 mg/d and one PLEX every 7 or 8 weeks.
I was also treated with Cellcept for several years without effect, I coudn´t take Imuran as I am also on allopurinol.
Maurice.

No. My dose has been 60 mg per day, or 1.8mg/kg/day since November 15th. It feels longer. I will see my neuro on Monday the 3rd. I still have 12-days worth of doses. I wonder if my neuro will have me have me finish the whole prescription.

-Mark-

Hello Mark,
Sorry for this but you wrote “To date I weigh (and dropping) 235 pounds or 106 kilogram...“ and since you take 60 mg per day, you are on 60/106 or about 0.6 mg/kg/day and not 106/60 or 1.8 mg/kg/d...
Maurice.