Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's

Deciding on Medication

3 Comments

When I saw the second consultant, in Southampton, we discussed medication in the terribly real terms of what I should do about it. The NHS seem to have a patient-led policy on Parkinson’s medication; they want the patient to make the ultimate decision on what drug to take. Information is provided, and advice, but the advice often seems to be limited in such a way as to avoid ‘leading’ the patient to a decision. This has the advantage of making sure that the patient is aware of the various options; a more cynical view would have it that it also limits the legal liability of the doctors.

Anyway, I’m all for understanding. I would want to know, regardless. But I did want a little more leading than the consultants were prepared to offer. Fortunately, the Parkinson’s nurse had dropped me a very big hint when she suggested that I investigate Rasagiline (brand name Azilect). That helped me work out which of the Monoamine oxidase inhibitors I should be requesting.

I’d worked out that, at this early stage, a monoamine oxidase inhibitor would be the best idea; they are mild drugs, with few or no serious side effects, and are often prescribed as a monotherapy (sole drug) for people in my specific situation: at the early stages of Young Onset Parkinson’s. I discovered that Rasagiline is a newer drug than it’s classmate, Selegiline, and has fewer side effects.

The consultant agreed with me. He said that that was a good choice, and that I was fortunate enough to live in an area where I was likely to be prescribed it (it costs more than Selegiline, and the NHS subsidises the cost of many drugs with a flat rate prescription fee). He added that it was a very mild drug, “almost a vitamin” (implying that it didn’t do an awful lot of good, but that it wouldn’t do any harm either).

He said it would probably be useful for about a year. This is an alarmingly short period, so I naturally asked him about what might happen later on. And this is when he made a surprising comment. He told me that he had come to believe that the second class of drugs commonly associated with the treatment of Parkinson’s – the Dopamine Agonists -were not worth the risk of prescribing. The risk he was talking about was that of adverse psychological effects (the scary personality changes that can, potentially, turn you into a gambling addict or a nymphomaniac); he told me that these problems were more likely to occur in younger people and that he no longer considered them suitable for Young Onset patients. He said that his change of heart was based on clinical observations.

He told me that his recommendation would be to go straight on to Levadopa when the Rasagaline stops working.

I was quite surprised to hear him express this opinion, because I was under the impression that the risk was low and that the scary side effects had been played up by scaremongers (but despite that, I very much did not like the sound of them). I was pleased that he had told me; it felt almost like a confidence.

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3 thoughts on “Deciding on Medication

  1. Seriously. I’ve only just read this post and it is confirming what I had suspected. That my consultant simplifies the choices and takes the ‘easy’ route. To my shame I didn’t even know there was a first level of meds. When I spoke with my guy he said Ropinerole was the fist line of defence. Clearly not. I’ve been meaning to look for a new consultant. Thanks for this . I needed a kick.

    • Do you have access to a Parkinson’s nurse? It seems to me that they tend to be more patient-focussed and are often more prepared to sit down and talk things through with you. Mine is happy to share anecdotes (anathema to almost any consultant) – with names omitted, of course. She helped me decide to, ahem, ignore the advice mentioned in the above regarding skipping dopamine agonists. Obviously, I’m not ignoring the cautions regarding said drugs.

  2. I’m new around these parts, but I would also confirm Zalamanda’s comments about the Parkinson’s Nurse. She is exceptional IMHO, and seems to take the lead over recommending drug therapies – for me at least. I don’t think we share the same Parkinson’s Nurse as we are in different counties – although by the sounds of it Zalamanda cannot be far distant from me – I am roughly 50 miles from Southampton too, at the Eastern end of Berkshire.

    I’ve seen 4 different neurology consultants over the last 12 months. Had MRI scans, and recently a DaTSCAN at Charing Cross in hospital – which confirmed a problem with dopamine. DaTSCAN is about as close as they can get with a diagnostic test, after a small injection of radioactive tracer which attaches to dopamine it measures dopamine levels in the central brain.

    Whilst the MRI and DaTSCAN are similar in relation to measuring stuff going on upstairs, I thought the DaTSCAN was more scary.

    With MRI you’ve got your head, shoulders and possibly your whole body in the measuring doughnut which is pounding you with magnetic impulses to see how cells line up – very good for spotting physical problems like growths, but of minimal value for specifically diagnosing Parkinson’s.

    With DaTSCAN there is no noise – your head is literally strapped to a fixed table so you can’t move, and two tea-tray sized panels sweep around your head – passing about 1cm or less from your nose! They fire low power radiowaves thru your skull to measure the radioactive tracer. This process takes 20-30 minutes. And those panels stop still in various positions. Believe me, you just have to lie there with eyes closed and think of England, opening your eyes when the panel is in front of your nose can be frightening. You don’t even have the luxury of headphones (well I didn’t anyway). After about 20 minutes my neck muscles were crying to be moved, but I had to put up with that for several more minutes before the nurse released me….

    Still, at least I got the confirmation that my dopamine levels were abnormal.

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