Sunday, March 7, 2010

Going down!

Two more blood tests – now weekly - and it’s clear that as the steroid dose goes down, so alas, do my platelets. The pathologist is now marking my thrombocytopenia as ‘moderate’, with the latest reading at 53 (thousand). My haemoglobin count has gone down to 112 and ‘mild anaemia’, and my white cells are also disappearing too, though only just below the safety zone of 4.

So – it’s not a one-off idiopathic event, but as I feared all along, it’s ongoing and will need careful management.

At this stage, my doctor and I are experimenting – within clear clinical guidelines – to see how my body will respond to some Chinese herbs to boost my blood cells and support my spleen.
I now have a mix of 10 powdered herbs – zhi huang qi, bai shao-sheng, dang gui, dang shen, bai zhu-chao, shu di, chuan xiong, rou gui, fu ling and zhi gan cao – to take in hot water twice a day. They initially tasted pretty awful, but I’ve found by diluting them more than the instructions said, they not only taste bearable, but are less likely to give me diarrhoea!

I don’t know what the western or common names for these herbs are, but there is certainly liquorice in the mix! This makes the herbal ‘tea’ almost enjoyable once I worked out a dilution that meant I could mostly only taste the liquorice.

We have also stopped weaning me off the steroids, so I’m sitting on 1mg a day until I see the doctor in a week’s time, when we might have to bump it back up to 2 mg.

Let your food be your medicine

As well as the Chinese herbs, I’m on a strict diet to avoid stressing my body too much. I’ve been eating what I believed to be a healthy diet of green salads every lunchtime, occasional mid-morning or mid-afternoon snacks of raw celery and carrot sticks, as well as apples and cantaloupe pieces. I’ve never been all that fond of raw veggies, and apples are the main fruit I like, but I knew that salads and fresh fruit were healthy, so I persisted.

Well, seems I was wrong, again. At least for now. I’ve been told to only have well cooked vegetables and stewed fruit, as it’s draining energy from my body trying to digest the raw produce. That’s actually what I prefer, and how I used to consume my fruit and veg, until I decided to get really healthy!

The harder part of the diet to follow is the restriction on sugar. Sugar reduces the effectiveness of the immune system, by deactivating the white blood cells, specifically the neutrophils which attack bacteria such as Staphylococcus aureus and Escherichia coli. Since I have a lowered white cell count anyway, it would be foolish to diminish their fighting powers.

So no sugar in coffee, no cakes or biscuits, no honey or marmalade on my toast, and no sugar on my morning porridge. It would actually be a total prohibition, but stewed fruit would taste pretty awful without a tiny amount of sweetness (and I refuse to eat chemical artificial sweeteners)! Porridge tastes surprisingly pleasant without sugar and with just a tiny amount of salt.

Still tired, & now weepy

Feeling blueIt’s depressing at times to find how easily I tire, and how little energy reserves I have. A walk to the park with a stroll around the duck pond, and then home again, can still knock me out for a couple of hours afterwards.

My brain feels like it has a hole in it, where the neurons have frayed apart, so I stop suddenly, mid-sentence, waiting for a neuron to bridge the gap and bring the word or thought back.

I have days when I’m shaky and a little weepy – some of which can be blamed on the steroid reduction, and some of it on the generally distressing situation.

On the plus side

On the bright side, my kidneys are almost back to normal – coffee tastes good again, yay!! My cholesterol count is rapidly dropping back to a safe level.

And, although I don’t know what I weigh this week, I can squeeze into more clothes and shoes, so I know the weight and swelling are going down somewhat. Still have the pumpkin face, but I have a sharp new haircut and a vivid purple hair.


  1. You could try reading the forum over at
    Lots of people there with ITP who know what you're going through.

  2. Hi Portia--

    I just came across your blog and wanted to leave you a note saying I really appreciate it. I just had my 5 year anniversary with ITP (big celebration!) and don't really have anyone to talk to about my disease, not someone who actually understands at least.

    I agree with Anonymous, you should consider WinRho. It has been my drug of choice for the past 5 years for many reasons. For me, it wasn't nearly as big of an inconvenience as prednisone, which made me feel like I was slowly eating my way into a deep insanity.

    I'm interested in knowing more about your chinese herbs...did you see someone to have them prescribed to you specifically?

  3. Hi Ms Hanson

    Thanks for your kind comments about this blog. I felt I was the only person with this condition, as no-one in my circle had ever heard of it (& I'm a health science writer!).

    And congratulation on your 5th anniversary - how marvellous!

    Thanks also to Anonymous. I shall certainly look at the forum, and may link to it in a later post. It's good to know there are other people dealing with this, & are further down the track than me, a mere newbie!

    I started the blog to connect with other people with ITP, & also to publicise the illness a bit more - at least to people who know me.

    As to the Chinese herbs - yes, I go to a doctor who prescribes them for me. She is a western-trained medico who also trained in TCM (Traditional Chinese Medicine) which is quite big here in Australia. She is guiding me in reducing the steroid dose and regulating my diet, and the herbs are to support my spleen and blood chemistry.