Friday, August 16, 2013

Another roller-coaster ride, so it's back to the research

This week's number was not a beautiful one like last week's. From 96, I dropped in seven days down to 41, a loss of over 50%.  Meanwhile my face is still swollen and uncomfortable, and my energy is unreliable, trickling away quite fast on some days, taking a while to get started on others. No wonder I've been a bit down this week,  a little weepy, or at least quite grumpy! 

On Monday I tried to get back to the gym, reasoning that structured  exercise would be good for my mood, but a combination of my bus being late, leaving me to stand around in the cold wind for 20 minutes and my energy running out before I got to the gym, meant the best I could manage was a gentle 15 minutes on the exercise bike and five minutes doing bicep curls and rotator cuff exercises for my damaged shoulder. The gym staff were, as ever, friendly and helpful,  and my membership fee suspension has been extended for another fortnight, bless them, but it was disappointing.

However, I can still work, thank goodness, if a little more slowly and my brain is still able to make sense of scientific and medical research information. So today I went searching again online for any news or recent clinical studies on ways to treat ITP.  In doing this research I've been reminded of a fact I keep losing sight of.  Unpleasant as my experience of ITP is, I am way better off than a lot of people! I do not have  refractory ITP, as I was beginning to imagine. Refractory ITP occurs when even surgery - splenectomy (removal of the spleen)  - does not produce a lasting increase in platelet numbers. I just have simple ITP.  My platelets respond OK to largeish doses of  the cortocosteroid prednisone (known in the medical world as Pred), and until recently they behaved reasonably well as we weaned me off the horrible things. I was down to 0.5mg a day for three months before my count got so low as to scare both my doctor and myself.

Options for ITP treatment

So here's what I've been reading.  First up, a straightforward account of the protocols of treating ITP: Immune Thrombocytopenic Purpura Treatment & Management. This is where I learnt that my ITP is not refactory.

Next I looked up Rituxan, as it had been suggested to me by two or three commentators on this blog as an alternative to the Pred, as a way of avoiding the horrible side-effects.  But, as the above article points out, Rituxan (also known as Rituximab and Mabthera) is a third level treatment - ie - after Pred and intravenous immunoglobulin or Rho(D) Immune Globulin haven't worked. But I read about a Danish multi-centre study into the use of Rituximab specifically in ITP patients, as the drug was actually developed for use in non-Hodgkin's lymphomas and other haematological cancers.  It's also used 'off-label'  in difficult cases of multiple sclerosis and lupus, and is a possible therapy for ITP.

However, it turns out that Rituxan by any name is not a replacement for Pred, but an adjunct, as the Danish study shows.  Nearly all the patients in the study were given Pred prior to their weekly  infusion of Rituximab.  Some received as much 100 mg each time. To be fair, that was only once a week, but that's a heck of big dose! And the results, from an overall count of  35 patients, less than half got a response of 50-100 more than their previous platelet score. So, while I'll discuss Rituxan with my doctor, and the haematologist when I eventually get to see him - my appointment is two month's away, I'm not pinning a lot of hope on it.

A cause for optimism

Lastly I found a site for patients called Platelets on the Web, which among other useful information, gives four patient stories of their experiences with ITP.  The one that gave me cause for optimism was that of a 75-year old woman who had incredibly low platelet numbers - down to 3 at one point - who was eventually able to go off medication after even a splenectomy did little to improve her count, and then a year or so after her initial diagnosis, had a complete spontaneous remission, and remained healthy for many more years. It's called Crystal's Story.  The take-home message I got from reading that - apart from the hope for spontaneous remission -  was her doctor's comments about "the value of cautious, conservative treatment for patients with ITP. The goal for treatment of ITP is only to treat or prevent bleeding.  There is no other goal.  The platelet count tells us something about the risk for bleeding, but even patients with very low platelet counts for a very long time may have minimal bleeding symptoms, or none at all. "

He goes on to say "patients with ITP who have very low platelet counts are often treated with many different medicines even though they have never had any significant bleeding. And the outcome is often that the treatment of ITP is much worse than the disease."

Woo hoo - a doctor who understand his patients!

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