Finally, the HB mystery unmasked!

shoulderAs 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.

4 thoughts on “Finally, the HB mystery unmasked!

  1. wow Greg thats a lot to deal with. But I bet you are relieved you have an ANSWER and know what you are dealing with. The hardest stuff is usually NOT knowing what the heck is wrong. I am so glad you are feeling better, WE MISSED YOU….
    thanks for being so open and honest…it does help others:)

    Now i don’t have this issue…..and i STILL don’t think i can touch my toes….hang on….

    well, sorta…..if i crumple myself up enough…LOL.. Need to take lessons from those dancing with the stars folks.


  2. What an ordea! Glad you’re doing better. I can somewhat relate. Was diagnosed with something similar in my early thirties (now 50); Polymyositis AND Fibromyalgia. Was also treated with Prednisone (for the Polymyositis). It helped strengthen my muscles back up but for me, the side effects were almost unbearable (crankiness, weight gain, bruising, thinning hair and for the first few weeks, even the muscle aches worsened but my Rheumatologist at the time warned me that it would get worse before it got better and so it did). Went into remission within a year but still living with the Fibromyalgia. In my case, no genetic link that we know of other than my mother had a mild form of Scarlet fever as a young girl and apparently that is not so uncommon with people with Myositis or Fibromyalgia.

    Aside from seeking medical treatment, I think the key to warding off pain and stiffness is to stay on your feet, keep mobile but without overdoing anything. I’ve had to learn to pace myself and that is not always easy because from day to day, we never know what life is going to throw at us. Stay strong and hope you keep us updated with your progress, including the ups and downs. There’s a lot for us to still learn about these darned auto immune diseases/disorders.


    • Thanks Debra. Yes, I can relate to worse before better. At the beginning when I was taking the Prednisone at a high dose (not transplant high, but high enough – 15mg/day), my BP was scary high for me: 220/90, no matter how much fluid I removed. And I tried: I felt like an Egyptian mummy after each run and still it stayed high. Eventually, I just decided to take it on the chin – no choice really, so I stopped freaking out about it. It lasted for 3 months and is only now coming back to normal (I’m on 9mg).
      I’m with you: keep moving, even if it’s only jogging around the bed.


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