St Croix River Road Ramblings

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Wednesday, March 20, 2013

More Sick Stories

  Prednisone and Myasthenia Gravis (MG)
Folks like me, who have an autoimmune disease are treated by taking something that puts our immune system into low gear overall, in hopes that production of bad antibodies will stop, or at least slow down so we can function.  I take prednisone, effective, but filled with side effects that, for me include weight gain enhancement (I can add a lb by looking at a piece of cake), and erratic blood pressure, blood sugar, mental stability, osteoporosis, and a few dozen other exciting and novel conditions.  So, we all try to figure the lowest effective dose.

At my last visit with the neurologist, I found out that tapering it might work best for me by taking it on alternate days, then every 3rd day, every 4th day etc, until either MG returned or I got off of prednisone totally.

Woke up this Tuesday feeling OK. Tuesday is the day for 30mg prednisone on my every 3rd day regime started March 4th, my experiment in trying to get off of prednisone and see if my underlying Myasthenia Gravis (MG) comes back again.  There is a slight chance (15%) that I am one of the few who goes into a natural remission--but I can't find out without quitting prednisone.

"What the heck," I thought recklessly, "might as well go for every 4th day instead of waiting for April." And so I skip prednisone on the 4th day.   No signs that MG was returning, nor problems with prednisone withdrawal yet.

Supposedly sudden withdrawal from pred. is fraught with peril, but not yet for me.  Dr. Google says abrupt withdrawal symptoms may include:  confusion, headache, fever, joint and muscle pain, peeling skin, weight loss, nausea and vomiting, dehydration, muscle weakness, and difficulty breathing.  None have appeared yet.  Wonder if it takes longer to crash?

Prednisone stops the adrenals from producing cortisol (sort of body made prednisone).  The withdrawal symptoms are because the adrenals have to restart again and produce their own stuff.  Somewhere in the quitting prednisone and startup of adrenals is a gap where the body is short on the stuff for awhile.

A trip Tuesday to Mayo for Margo. Walked briskly for 30 minutes roaming the subterranean passages under Mayo that only a former employee would know, before heading to the 19th floor to strap on a 24 hour Holter BP monitor.

My family doctor worries about my somewhat high 162/92 blood pressure--is it real, or just when she is holding my hand (30 year old very attractive woman). So, every 10 minutes the portable machine inflates the cuff, my hand goes numb, and another pressure is read.

Tuesday evening I am relaxing in my recliner, trying to get ready for the night shift with every 20 minute machine squeezes.  Everything seems normal.  Heck, if I wake up, may try skipping another day of prednisone.  Remember friends, my goal is to find out if I am in true MG remission--that MG has gone away and I no longer need to treat it.  I suppose, my reckless behavior might be attributed to prednisone withdrawal confusion ;-)

Wednesday March 20th--the first day of spring starts out at 4 degrees above zero here on top of the big hill west of Pine Island.  Down the hill in Pine Island it is 1 below zero! Living on top means more wind so the temperature advantages don't really matter.  The cardnials and chickadees are singing spring songs despite the 12 below windchill.

Another morning feeling reasonably good. So, for the 5th day in a row I am skipping prednisone.  Wondering if MG symptoms (double vision, closed eyelid, breathing difficulty and weakness will return or if I the prednisone withdrawal will start, or if I can tell the difference).  I do notice sore joints that I haven't had for many months. Prednisone masks the normal aches and pains of old folk's knees, elbows, hips etc.

My BP monitor, after waking me up for a couple of 20 minute starts at night, soon was forgotten and I slept through. When I awoke with the sun shining in the window, I took the BP monitor out of the pouch and watched it go through a cycle. At the end of a the cycle, for a few seconds, it shows the BP reading and HR.  The values were well down in the normal range!   Makes me think that all I need to do to have normal blood pressures is stay in bed or the recliner more of my day!

My prediction:

Doctor: "We don't have to treat your BP, but if you would lose 20 lbs, it probably would be back in the excellent range all of the time."
Patient: "Sure thing, that is next on my schedule."

Margo and I retired 7 years ago (just striplings at the time) and have spent most Jan-Feb's in the deep south avoiding the MN/WI winters. Of course this winter we had to stay near Mayo for Margo's chemo.   In LA, AL, and TX we acquired a taste for grits, biscuits and gravy, and ham steak with red-eye sauce.

Up here those are rare, so for breakfast today I do my imitation.  We buy the canned version of B&G, Pillsbury refrigerated biscuits, and substitute our own MN made Hormel Spam with Soy Sauce for ham steak and redeye. Once a week we try it--and if I am ambitious, some cornbread in place of the Quaker instant cheesy grits.

Margo is recovering nicely from surgery. The flood of advice from her doctors are "do the radiation, as 5% chance of cancer recurrence is much better than 30%."  Margo agrees.  So 5 weeks of 5-day per week treatments are likely to start in mid April.  Her hair continues to come back--now a fraction of an inch, but giving her head some dark color again.  She hasn't taken out the vacuum cleaner to redo my efforts yet, but I think by week's end she will be at it a sure sign of returning health.  ;-)