Sunday, 23 November 2014 05:00

Finally, the HB mystery unmasked!

Written by  Greg Collette
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As regular readers will know, over the last few months, I became quite unwell well, with fevers, lethargy, persistently low haemoglobin level (HB) and generally feeling crappy.  Also, gradually (so gradually I didn’t realise it was happening), my muscles and joints began to stiffen and lock up.  I was walking around like a wizened old man: bent over, no flexibility, only just able to touch my toes.

I eventually spent a couple of weeks in two different hospitals.  But it seemed that no-one could find the problem, until one young and enthusiastic doctor thought he recognised it, because it was his specialty.  He sent me for a full body MRI and which confirmed his hunch.  I had something I could barely pronounce: Polymyalgia Rheumatica (PMR).

Polymyalgia means “pain in many muscles”, which is pretty accurate.  The textbook says it causes pain and stiffness in people aged 50 and over (I’m 62 – Check!), including:

  • Muscle pain and stiffness, particularly in the neck, shoulders, hips and upper arms (Check!)
  • Stiffness that worsens after resting – for example, when getting up in the morning (or getting out of a car after a 30 minute drive – Check!)
  • Fatigue (Check!)
  • Difficulty sleeping (not me!)
  • Difficulty raising arms above shoulder height (Check!)
  • Unexplained weight loss (I lost 5 kilos (11lb) – Check!).
  • The onset is usually sudden (Check!).

The pain and stiffness came from inflammation when my white blood cells attacked my larger joints causing swelling in the shoulders and hips, and in the tissues around them.  The reason for PMR is unknown, though it may be triggered by respiratory viruses.

Apart from people over 50, women are more likely to develop it than men and interestingly, Caucasians are most susceptible especially people of Northern European (Scandinavian) origin (where my ancestors hail from!).

The good news is that it is pretty easy to treat, with my old friend from transplant days, Prednisone (/Prednisolone).  I have disliked and dreaded taking this drug since my first transplant.  It has many side effects on the bones, body and brain, but the one I dislike the most is the tissue-thin skin that bruises and tears at the lightest brush against a hard or sharp surface.

Still, after just two days of 20mg, my symptoms faded away.  It has simply eliminated the inflammation and all the nasty symptoms that came with it.  I feel ten years younger.  Toe touching is no longer a problem.

I have to take the Prednisone for at least a year, in gradually reducing doses until I find a level that just keeps the PMR at bay.  I am reducing the amount I take by 1mg a month .  (It’s a bad idea to stop or slow Prednisone suddenly: that can lead to an Addison crisis, and that’s not for me.)

One interesting reaction to being free of PMR is the rise in my HB level.  It has soared to 15+ gm/dL a dangerously high levels for people on dialysis, increasing my risk of thrombosis (blood clots).  Obviously the PMR suppressed my (or EPO’s) ability to create red blood cells.  Once removed, red blood cell production went into overdrive.

My nephrologist wanted it back down ASAP, so he has reduced my EPO and more traumatically, told staff to dump my blood at the end of three runs, rather than returning it to me.  That’s about 250mls of blood each time.   300ml of blood equates roughly to an HB level of 1 gm/dL, so the maths is right.  It just feels very wrong throwing blood-filled lines into the bin, especially after struggling to get every red cell back when my HB was so low.

Anyway, after all that time and drama, I’m back to being my sprightly self: walking, going to the gym and generally feeling exuberantly dangerous to myself and others.

... https://bigdandme.wordpress.com/2014/11/23/finally-the-hb-mystery-unmasked/

Greg Collette

Greg Collette

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