New Doctor

Brief Case History for New Endocrinologist

I’m meeting a new endocrinologist on Wednesday. Here’s the short case history I wrote up, since my treatment primarily affects the endocrine system.

Overview
• Apr 2009: Paraneoplastic syndrome worsened—needed a cane, brain fog, sleeping 12–14 hours/day.
• Jul 2009: Began steroid pulse therapy (IV prednisone 1000 mg). Rapid symptom relief, but effects faded within weeks, so moved to 1000 mg IV every 4 weeks.

Response and drift
The infusions initially relieved most symptoms. By mid-Nov 2009 I relapsed for a few days before the next infusion; similar in Dec. We added extra pulses every 12 weeks. Over time, BP/pulse spikes lessened (by May my BP was 90/50 two days post-infusion), and benefits decreased: more stuttering/slurring, right foot turning out, odd shoe wear, blisters between big toe and ball of right foot. Gait video showed ankle turning in and poor lift; new shoes with extra arch support helped.

Post-infusion illness
Two days after the 8/27/2009 and 9/25/2009 pulses I became ill (fatigue, nausea at times, brain fog). After 8/27 I had right-sided numbness; after 9/25 I had hoarseness and right-sided neck pain/tightness. First episode lasted a week; second hasn’t fully resolved.

Question for new doctor
My next infusion was planned for Fri 10/22. Given the pattern of getting sick ~48 hours after pulses, should I skip this month to avoid another crash?
I’m wondering if these episodes could be steroid withdrawal/adrenal insufficiency rather than true neurologic relapse. Prednisone withdrawal symptoms (general malaise, muscle weakness, severe fatigue, low BP, nausea, dyspnea) overlap my “relapse” symptoms.

Monitoring asks
• Can we evaluate adrenal function (AM cortisol, ACTH, ± cosyntropin test)?
• Repeat labs/24-hr urine for cortisol as I did years ago?
• Any additional monitoring recommended for high-dose, intermittent IV steroids?

Treatment options to consider
IVIG? Other immunosuppressants? (I’d prefer to avoid daily oral steroids if possible.)

Prednisone 1000 mg IV timeline

  • Jul 29–31, 2009
  • Aug 28, 2009
  • Sep 25, 2009 — difficulty breathing during infusion; resolved in ~1 hour
  • Oct 23, 2009
  • Nov 17: pre-infusion relapse—right-side weakness; needed cane
  • Nov 20, 2009 — regained ability to walk post-infusion
  • Dec 6: relapse—right-side weakness; brief inability to open right eye
  • Dec 16–18, 2009 — improved after 3-day pulse
  • Jan 15, 2010
  • Feb 12, 2010
  • Mar 12, 2010 — between pulses relapsed; plan changed to 3 pulses every 12 weeks
  • Apr 7–9, 2010 — 4/8 sent to ER for numbness, head-holding difficulty, labored breathing; improved within hours
  • May 7, 2010 — 5/9 BP measured 90/50
  • Jun 4, 2010
  • Jun 30–Jul 2, 2010
  • Jul 30, 2010 — 8/10 right-side numbness, facial droop, gait/breathing issues; cleared in ~2 days
  • Aug 27, 2010 — 8/29 ill, right-side numbness/weakness
  • Sep 22–25, 2010 — 9/27 ill during PET/WBS week; 9/28 hoarseness ~2 weeks, neck tight, burning with breathing, profound fatigue

Open items
• Safety of continuing monthly pulses vs spacing/holding one cycle
• Workup for suspected adrenal suppression
• Alternatives or adjuncts (IVIG, other immunomodulators)

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