Being a Guinea Pig

Oh Lordy what have I let myself in for; as a rule I don’t bother reading the leaflet inside the boxes of prescription drugs so generously given to me by the Welsh Government. But this time I did; it being the first time I was going to be popping these particular pills and more specifically because the drug has only been recently licenced for use (last year I think in Wales). Plus because none of the doctors in the practice have used it nor has the Pain Consultant at the prescribing hospital. If I am to be a guinea pig I should take this one a little more seriously given the not insignificant investment being made in the resolution of my pain. The irony is that articulate patients are frankly irritating and well a bit of a pain!

The GP who is a senior partner in the practice was the doctor I always chose to see because he was lovely and minded to say ‘I think you’re doing brilliantly’ which helped (sometimes). This gentleman grew up in Barry where his father was a doctor before him and he was at school with a number of his patients. As a result he is often the subject of conversation in the changing rooms of a morning; ‘the lovely Dr Jones’, ‘ooh you’d have his babies’ and ‘he’s such a great family man’. Yes frankly we should have better things to engage us in our post chlorine ablutions but this is a small town; this kind of intelligence matters.

Dr Jones used to scan the side effects of drugs he was considering prescribing saying well these are all the symptoms of MS so you probably won’t notice any difference! Pragmatic and true; no point gilding the lily in such circumstances. Honesty is something I not only appreciate but value; the truth will out after all (at least in my experience).  For drugs that have been on the market for a while the contra indications are generic and short in the main; it’s hard to distinguish between one drug and another especially within family groups i.e. things that do the same job (pain, lower blood pressure etc.)

The new drug is called Palexia; hailed as the first strong painkiller than isn’t morphine based. The classic statements in the leaflet: If you interrupt or stop treatment too soon, your pain is likely to return’ really? Encouraging there are ‘Generally there will be no withdrawal effects when treatment is stopped’ marvellous. However some people may experience ‘feeling restless, irritable, anxious, weak or sick (nausea), loss of appetite, being sick (vomiting), diarrhoea’ ‘watery eyes, runny nose, increase in size of pupils in the eyes (dilated pupils)’ I could go on!

The Possible Side Effects are rather more (amusingly) curious: these are divided into:

  • Important side effects
  • Other side effects: (Very common)(affects more than 1 in 10 patients)
  • Common (affects less than 1 in 10 patients)
  • Uncommon (affects less than 1 in 100 patients)
  • Rare side effects (affects less than 1 in 1000 patients)

It seems to me that some side effects may cause some of the others; it’s obviously surely?

Important side effects: cause allergic reactions (uncommon), wheeziness, difficulty breathing, swelling of the eyelids, face or lips, or rash or itching which may cover your whole body! So it might mimic biological washing powder? Hmm. It goes on ‘another serious side effect is a condition where you breathe more slowly or weakly than expected (rare). It mostly occurs in elderly or weak patients’. Well 42 is not elderly and I don’t think I’m particularly weak right now.

Very common: feeling sick (nausea), constipation, dizziness, drowsiness, headache’ oh the usual then. I like the way the side effect is made explicit with the handy clarification in brackets in case you thought feeling sick was something other than nausea!

Common: decreased appetite (not unwelcome), anxiety, being sick (vomiting) etc, sleep problems, tired or exhaustion (fatigue), feeling of weakness etc now surely it follows that not sleeping will make one tired? Feeling depressed, nervousness, restlessness, lack of attention; feeling hot (flushing), increased sweating etc all the symptoms of a menopause perhaps; alarming if I was a man and situation normal as I’m not.

Uncommon: weight loss (perhaps associated with decreased appetite see Common), low awareness of time, place or identity (disorientation), confusion, excitable (agitated), disturbance of perception, abnormal dreams, forgetfulness etc see menopause above. Very happy (euphoria), less consciousness, fainting, feeling unsteady, numbness hmm so I could be VERY SAD or ECTACTIC! I have edited out the numbness etc that are part of the MS basket of goodies. The best bit is yet to come: sexual dysfunction, feeling strange, irritable. Mm does this necessitate a precautionary visit to the world of Ms Summers; perhaps the first leads to the second? It certainly p*sses me off; irritable is a mild was of describing that form of frustration!

Rare side effects: addiction (if you live with chronic pain i.e. lasting longer than 3 months, and need to continue popping the pills how do you know when you’re addicted? Especially if stopping taking them leads to the pain returning? I mean let’s be realistic if drugs stop the pain you’re hardly inclined to stop taking them are you? We continue thinking abnormal, epileptic fits, near fainting (this is curious as fainting (rather than near fainting) is uncommon whereas near fainting is rare?

The informative leaflet ends this section with the glorious sentence ‘In general, the likelihood of having suicidal thoughts and behaviour is increased in patients suffering from chronic pain. Concluding with the ‘arse covering’ statement: In addition, certain medicines for the treatment of depression (which have an impact on the neurotransmitter system in the brain the area already damaged in persons like moi with MS) may increase the risk, especially at the beginning of the treatment. Although tapentadol also affects neurotransmitters, data from human use of tapentadol do not provide evidence for an increased risk.

 

So if you do feel a bit blue to start with hang in there because there is a 1 in 100 chance you could experience feeling of very happiness (euphoria) not to overlook the loss of appetite (1in 10) that could lead to weight loss (1 in 100). In the round it seems worth a punt as who knows there is a fighting chance I could be an ecstatic pain free whippet! None of these would be unwelcome right now…

For those of you who worry about me please be assured I’m hanging in there just taking each day as it comes! A weekend en famille was a tonic as I always forget how my brother makes me laugh especially when reading this little insert! And as I end this the news that the man with locked in syndrome has been given leave to take his case to court restores my faith in the legal system (at least momentarily).

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