Side effects

Friday 28 April 2017

I read the list of potential side effects on the leaflet that comes with my box of pramipexole.

Very common (may affect more than 1 in 10 people):

• Dyskinesia (e.g. abnormal, uncontrolled movements of the limbs) 
• Sleepiness 
• Dizziness 
• Nausea (sickness)

Yep, I’ve had all of those.  I read on…

Common (may affect up to 1 in 10 people):

• Urge to behave in an unusual way 
• Hallucinations (seeing, hearing or feeling things that are not there) 
• Confusion 
• Tiredness (fatigue) 
• Sleeplessness (insomnia) 
• Excess of fluid, usually in the legs (peripheral oedema)
• Headache 
• Hypotension (low blood pressure) 
• Abnormal dreams 
• Constipation 
• Visual impairment 
• Vomiting (being sick) 
• Weight loss including decreased appetite 

At this point I realise it’s easiest to identify the side effects I haven’t had, namely the "urge to behave in an unusual way" (I assume you know what this means if it happens...), confusion, oedema and weight loss.  I’ve had everything else in the “common” category.

It’s only when I get to some of the scarier side effects in the “uncommon” category that I start to feel that perhaps it could have been worse.  Fortunately, I don’t identify with any of these apart from the one-off fainting episode a few weeks ago.

Uncommon (may affect up to 1 in 100 people):

• Paranoia (e.g. excessive fear for one’s own well-being) 
• Delusion 
• Excessive daytime sleepiness and suddenly falling asleep 
• Amnesia (memory disturbance) 
• Hyperkinesia (increased movements and inability to keep still) 
• Weight increase 
• Allergic reactions (e.g. rash, itching, hypersensitivity) 
• Fainting 
• Cardiac failure (heart problems which can cause shortness of breath or ankle swelling) 
• Inappropriate antidiuretic hormone secretion
• Restlessness 
• Dyspnoea (difficulties to breathe) 
• Hiccups 
• Pneumonia (infection of the lungs) 
• Inability to resist the impulse, drive or temptation to perform an action that could be harmful to you or others, which may include: 
• Strong impulse to gamble excessively despite serious personal or family consequences.
• Altered or increased sexual interest and behaviour of significant concern to you or to others
• Uncontrollable excessive shopping or spending
• Binge eating or compulsive eating 
• Delirium (decreased awareness, confusion, loss of reality)

I did, however, get the last one on the list.

Rare (may affect up to 1 in 1,000 people):

• Mania (agitation, feeling elated or over-excited)

When I saw The Professor a couple of weeks ago I told him all this and was expecting him to reduce my dosage. 

To my surprise, he told me to stay on the same prescription, presumably on the premise that if the dosage stays the same the body will adjust in time.  In retrospect I guess he was right as most of the side effects have disappeared and I now only display minor Parkinson’s features like the occasional tremor in my right hand.

The one significant problem I still have, other than my eyesight, is disturbed sleep.  I have no problem getting to sleep; it’s just that I usually wake up at 3 or 4am then struggle to get back to sleep.  Hopefully that too will settle down in time.  And on the eyesight problem, he saw no risk in me going ahead with surgery.  More of that to come later….

It will be five months before I see The Professor again.  Perhaps by then the blood tests results will be ready and I can start resolving the hereditary mystery.

I do not know if the drugs will remain effective until then, but what I do reflect on is how serious all this business is… messing with the delicate chemical balance in my brain on a daily basis is not to be taken lightly. 

I try not to obsess over it too much and quietly get on with my life. 

What else can I do?

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