Atypical olanzapine side-effect?

I don't know how relevant my friend's story will be to most people taking olanzapine but I think it's worth reporting anyway.

This 80-year-old lady (for whom I'm responsible as all her family are on the other side of the world) started developing vascular dementia six years ago and moved voluntarily into a care home three years ago. All was well for the first two years, but then she went into a psychotic episode, brought on by a quite innocent episode in the home which brought back memories of the severe sexual abuse she'd suffered as a child.

After that it was downhill all the way. A vigorous woman in excellent physical health, she started violently attacking the care staff, as well as some of the most vulnerable residents. After a five-month roller-coaster of horrifying doses of benzos and antipsychotics, not to mention spending a few days on the Liverpool Care Pathway in a geriatric ward, she was finally admitted to a high-security unit eight months ago, where she was put on olanzapine 10mg, mirtazapine 30mg and varying doses of alprazolam. Olanzapine seemed to suit her quite well. At least it didn't produce the dreadful side-effects of risperidone (which had nearly killed her some months earlier) and clozapine.

And yes - as a former nurse I'm well aware that this is an off-label (unauthorised) use for olanzapine and, indeed, any other antipsychotic drugs, but they're prescribed for half the dementia sufferers in the world.

Three months after starting on the olanzapine, her left hand suddenly swelled massively, with the fingers bent tightly into the palm. This happened literally overnight. The hand was X-rayed but nothing showed up. Various anti-inflammatory meds were tried, but the condition continued to worsen. Her hand, which rapidly became completely useless, swelled to twice its original size and the fingers ressembled bananas. The skin was red, shiny and hot, with the appearance of cellulitis, and looked as if it might split. Because it was completely impossible to open her fingers, her nails started growing into the flesh of her palm, producing infected wounds which couldn't be accessed for cleaning.

When the other hand showed signs of going the same way, I had a hunch that it might be the olanzapine. Don't ask me why. I scoured the web (I read in four languages) but could find absolutely no reference to this, apart from the mention of peripheral oedema. And peripheral oedema didn't go anywhere near describing my friend's condition.

Finally, I emailed the manufacturer. I'm not sure whether naming them would count as advertising according to the rules of this site, but you can google it - and those of you who take the stuff will know anyway. To my amazement, I received four calls from them in the next three days - one locally and the other from their European HQ.

Following this, I managed to prevail upon the home to try reducing the dosage from 10mg to 7.5mg. Within a couple of weeks, the swelling had entirely gone down. Unfortunately, the hand remains spastic and useless, but I suspect this may be part of her advancing dementia anyway. At least, though, I can now prise her fingers open enough to cut her nails. And she didn't develop any rebound psychosis following the reduction - unlike her reaction to the reduction and withdrawal of risperidone, which plunged her into extreme paranoid psychosis.

Since then, I've received another three phone calls from the manufacturer asking about her - that's seven calls over a three-month period, in response to just one email. During the last call, a week ago, they asked permission to call me again in a few months' time.

Is it just my suspicious mind, or does anyone else think they might have heard this story before, even though it doesn't appear anywhere in the literature? Or, I suppose, one could put another slant on it, and say they're acting responsibly. Hmm...

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