Coming Off Clozapine Part One – A Slightly Scientific Approach

Such is the inspiration when coming off meds…

Today’s date 6/6/2021

Current status – hospitalised in local mental hospital, nearly three weeks in in accordance with section two of the Mental Health Act (1983).

Reason – acute insomnia and other textbook strong side effects from forced and abrupt cessation of Clozapine after 15 years on it.

Outlook – positive after sleeping well for the previous 11 nights.  Discharge from hospital expected in two days’ time.  I have very good insight into my mental illness and have remained (mostly) rational and busy (with painting and writing etc.) throughout.

The paintings here are from my three weeks stay on the ward.

I borrow from Monet a lot. This is inspired by one of his of the Grand Canal, Venice. This is only 6×5 inches.

Clozapine is an anti-psychotic drug.  It was very helpful for me for 15 years.  In 2006 when I began taking it I had spent four years all over the place with serious mental illness, psychosis, panic attacks and anxiety.  I also had PTSD from a bridge jump suicide attempt in 2002. I was lucky to make a full physical recovery from my broken back.

Clozapine, that I have referred to as my ‘favourite drug’ many times because of how much it helped my psychosis, panic attacks and anxiety, is a strong drug. It is used for people who haven’t responded well or at all to other anti-psychotic drugs because it can have some serious though rare side effects and regular monitoring is essential.  More commonly it can cause weight gain, drooling (hyper-salivation – a brilliant piece of medical terminology), constipation, dizziness.  These are all common among similar, weaker, medications for psychosis and schizophrenia and the list goes on with that kind of thing.  It also can increase the heart rate a bit.  Also, it can in very rare cases lower the neutrophil count in the blood, a condition known as agranulocytosis.  Neutrophils, I am told by the clozapine clinic that have been doing my tests and physical observations successfully for 15 years, are a type of first responding white blood cell.  When this happens the immunity system is suppressed which may unfortunately result in death, if untreated/ignored.  This is why regular testing when on clozapine is vital.

And again, borrowing from Monet. This one is full size, acrylics on canvas.

It’s very rare.  Five weeks ago it happened to me, the first medical concern of being on Clozapine in 15 years, and I will say again, it did so much for me, for my mental health, it helped me get my life back.  I have thought of it with actual fondness all these years.  And in present day I am eating up life’s challenges mostly, doing so well.  But I went for my regular monthly testing recently, where they test several aspects of the blood, and do heart rate, blood pressure, weight and temperature while we’re there.  They also measure my height once a year, just to be on the safe side.

Gina, one of the crew at the testing centre who has been helping me for 15 years steps back from the testing machine after putting my blood sample into it and says

“Oh.”

    “What is it Gina?”

“You’ve got a red result Pete.”

    “Oh.” I say. “Why?”

“I don’t know, we’ll do it again.  Bear with me.”

    “Sure.”

“So Pete, you have a red result on the neutrophil levels.”

This is precisely why we test every month, to make sure that if this happens it is noticed and treated.

    “Right, okay.  Gina, can you tell me again – what is a neutrophil?”

Normally we chat over a few tests and it’s pleasant conversation, there are at least two people there when we do it and we talk about mental health mainly, the testing is done at a mental health outpatients facility and is full of professionals, including local psychiatrists. I like it there most of the time, the appointments are on time and appropriately succinct except for my blathering on about mental health anecdotes from my past.  I like talking mental health when with MH pros. 

“So Pete, neutrophils are a type of white blood cell.”

    “Ah. I see.  This is why we do the testing every month isn’t it.  How low is it? What is the normal range and what is mine today?”

Gina has gone quiet which begins to worry me.

“I’m not really sure Pete.”

This stuff is above her pay grade.

“I’m sure it’s nothing to worry about, when this happens the procedure is to get you seen by your doctor (psychiatrist, not GP) ASAP, and he’ll take it from there.  Unfortunately you need to stop taking any clozapine.  Seriously Pete, you must not take any of the clozapine you have at home.  We will need to continue your blood tests every day now until the white blood cell count returns to normal.  So we’ll get you to see your doctor this afternoon.”

    “You’re too kind Gina.”

I did nine paintings.

It’s not actually that much to take in, though the staff in the clinic are unable to answer my questions like how low is it, is it definitely due to the clozapine (we know it’s a possible side effect), when will it go back up again, can I change my diet to support the problem…

I see my doctor the next day.  Mum sits next to me.  My psychiatrist says –

“Blah blah blah, blah, blah blah blah but I’m sure it’s nothing to worry about.  Usually we stop taking the clozapine and the neutrophil count returns to normal within a week.”

“A week with no white blood cells? During Coronavirus?” I look at Mum.

“Pete I wouldn’t say it’s a worry at this stage either,” she says.  “If it was still like this in three months I’d be concerned, but not yet!”

The doctor continues and explains that the normal range of healthy neutrophils is between 4 and 8.  Thankfully I’m at 3.7.  So it’s not that bad.  But we haven’t done full blood tests yet and are only assuming it’s the clozapine causing it. 

“It’s also possible Pete that it might not be the clozapine.”

    “Oh that’s a relief” and I sit back in my chair like this will be sorted and I’ll go back to meds and be on the sunny side of the street promptly enough.

I look at mum to express happiness that I might be able to go back on the drug that has worked very well for me.  She returns only a half smile.

“Not really…It could be a blood disorder.”  Says the doc.  “Like Leukaemia.  It’s very likely to be the clozapine, even after 15 years it can happen.  So we’ll do a full test and find out.  But in the meantime don’t take any more clozapine.”

Christ. Leukaemia. After leaving the doctor until tomorrow’s appointment we head to reception and ask about having the test there and then to avoid the anxious wait, of course we are told to wait again and to go to the hospital tomorrow for testing.  To my relief a senior member of staff who walks past and knows me stops for a quick chat and tells me we should indeed do the blood draw then and send it off urgently today for testing and I’ll get a phonecall this afternoon with results.

Four hours later I heard some sweet words. The phonecall said my liver function is fine, there’s no blood disorder, it’s the clozapine.  Nothing to worry about, coming off the clozapine is all I have to do and in a few days my blood should be fine.  The only other thing not completely normal about my blood is that I have a nice, healthy low cholesterol level. 

My mental health has been barely an issue for years.  I have great support.  Both my parents who live closeby, my mum in the next bedroom, my dad half a mile away, are trained and qualified psychiatric nurses.  I’ve worked hard to get better and had good luck. I’ve written mental health articles.  I work, I am busy, I love my life, I have many good things in my life and lots of smarts and insights into my mental health though I’m aware, I blow my own trumpet. I have taken up painting recently, loving my new hobby. I’m well. If anyone can come off meds successfully it’s me. I’m happy with the situation.  My mum mostly agrees, though she would rather I taper off more gradually, but we know that cold turkey is an option. 

So a new chapter begins. It’s time to see how I do without medication.  Sound’s easy. Little did I know I’d be hospitalised a few days later in the mental hospital because of it.   

This Post Has One Comment

  1. It is such a positive to know that the new ward at Parklands should embody more advanced amounts of OT and support/ therapies.
    Some hospitals differ radically from the experience you had Pete. The mention of solitude in a dark place sadly resonates. 20 days. Times for trusts to learn from each other. Thanks for the blogs.

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