14. Medication Decisions

The not so small print : I am starting this blog with a very strict voice, looking over my glasses balanced on the end of my nose.

In the same way that PD is individual, the prescribing of medication is as well.  Even if individuals seem to have the same symptoms, they may be prescribed different meds/doses.  Meds need to be monitored and changed with the supervision of a medical professional.

This blog should NOT (sorry for shouting) be used as a textbook for serious medical information.  If you must use this blog for anything PD related, then may I suggest you get a proper official PD medical book out of the library*.  Then, whilst sitting at a desk reading the official book, you tear out some virtual pages from this blog.  Then carefully fold them to put under the leg of the table to stop it wobbling (it really is not good for anything else).

*library (definition for the youngsters) – a place where you borrow books for free (nb : you have to give them back).

That’s enough small print, back to the blog :

I will go back to November 2012, diagnosis day, to talk about my personal ‘Medication Journey’ (I’m sorry, that’s an awful title).  I could say ‘Drug Decisions’ (although I don’t like that word).  So, I’ll say ‘Medication Decisions’ (the alternative sounds a bit sinister).

  • November 2012
  • Diagnosis day : My consultant offered me medication there and then, but I said I’d wait.  My symptoms were annoying but didn’t stop me doing anything.
  • August 2013
  • I made the decision to start medication.
  • It was a very personal decision and not one I took lightly.  Pre PD I thought twice before even taking a headache tablet.  I had conversations with my very supportive PD nurse and consultant to get all the information I could about meds, side effects and pros and cons of when to start medication.  PD was having a bigger and bigger impact on my life and I decided I wanted to be the best I could be now.

When I picked up that first prescription from the chemist I cried.  I cried because I realised that this would be the start of taking medication every day until they find a cure.  Would they work, would I get side effects?  It was the unknown.

Now the medication list :

  • Prescribed : Ropinirole prolonged release tablets
  • What is it : Dopamine agonist (if I understand it correctly then it encourages my brain to use any remaining dopamine production)
  • Specific information : Prolonged release means the tablets disperse gradually.  I was also given a prescription for anti nausea tablets.  My neurologist very seriously told my husband to look out for possible compulsive/obsessive side affects (e.g. gambling) which affects a small proportion of people who take this medication.

Crickey … in the early days of introducing this medication, I certainly needed the anti nausea tablets. One particular occasion I literally could not lift my head off the pillow.  The anti nausea meds really worked and I took them for the first few days each time I increased the dose.

The starting dose was not enough to have any noticeable affect (I had been warned about this).  However, under medical supervision and guidance by my neurologist I gradually increased the dose over quite a long period of time until it reached a level where I was quite stable for a short while.

Each time I change/increase meds it takes anything from a few days to a couple of weeks for them to start having a proper effect.  These are powerful meds, and to be honest I have no idea exactly how they work.  Actually, I don’t need to know how, I just need to know (and hope) that they do.  I could copy and paste the NHS description, but you can look that up yourself.

I have a silly, simplistic explanation that I think about when starting/increasing meds to make it less scary.

Put your hand up if, when you were a child, you imagined tiny people in your body making it work, e.g. pumping your heart?  Okay, no-one?  Come on there must be someone.  Hold on, a couple of hands up at the back … phew not just me then.

Imagine if you will, Lionel and Lavinia who are dopamine dealers in my brain.  They are having a discussion about the depleted dopamine and their impending compulsory redundancy.  One day a mystery package arrives.  There are no instructions.  After a few days of head scratching and running round in circles creating general dizziness, they eventually work out how to open the parcel and what to do with the magic bean inside.  After a while they manage to restart some dopamine production.  Each time the magic bean arrives they know what to do straight away, until a dose is changed and then they have to work it out again.

So, Neuroscientists (seriously, I don’t think for one moment that any are still reading this waffle, but it’s possible), if not for me, then for Lionel and Lavinia (and others like them), please please find a cure so that dopamine production is restored.

  • February 2016
  • Prescribed ‘gold star medication’ : Levodopa tablet (three times a day).
  • What is it : see blog ‘3.New Words’ for more information.
  • A miracle to begin with …
  • November 2016
  • Prescribed : Entacapone tablets (three times a day with levodopa).
  • What is it : It is used to help levodopa work better.
  • Reason : Meds kept switching on and off.
  • December 2016
  • Prescribed : Increased levodopa and entacapone to four times a day.
  • Reason : Meds not lasting.  A big decision to increase to four doses a day.
  • January 2017
  • Reason : As sleeping not good, this gives me some help through the night.
  • Bedtime prescribed : Half Sinemet controlled release levodopa tablet.
  • March 2017
  • Prescribed : Dispersible Madopar tablets.
  • Reason : For use in emergencies.  Dissolve in a small amount of water to get out of a sticky situation if meds switch off.
  • Question : If levodopa is so good why do I hesitate before increasing the dose?
  • Long term use of levodopa can lead to side effects.  Namely, uncontrollable movements (dyskinesia) and on-off periods.  As I am young and in this for the long haul then I need to have as many good years as I can with the levodopa.  This is because as the condition deteriorates then I will need to take more levodopa to control the symptoms.

Every cloud has a purchasing opportunity.  I need to be organised with all this medication.  With low expectations I searched on-line for a ‘tablet holder’ and was initially excited by the long list of searches which came up.  On closer examination I found that the lovely tablet holders were for the computer kind and not the medication kind.  There is definitely a gap in the market for funky medication storage, for multi dose diseases.

I eventually found a boring meds organiser, but it does the job.  I must admit I get quite a lot of odd satisfaction from organising the tablets each week.

Oh yes, another thing.  The meds have to be taken at strict times, decided with the neurologist.  Hence I have alarms set throughout the day to remind me.

Oh yes and and yet another thing.  I should leave about 30 minutes either side of taking a tablet before eating.  This is so that the tablet does not compete with food absorption.

And another.  Eating protein at the same time interferes with levodopa absorption.  So, ideally, I need to leave a gap.

And another.  Entacapone interferes with iron absorption if taken at the same time.

So trying to decide what and when to eat is quite a challenge.

  • Couple of top tips :
  • You can buy a prescription pre payment card through the NHS, which is cheaper when you need several prescriptions a month.
  • Most pharmacies can set up automatic repeat prescription ordering for monthly regular prescriptions.  My local pharmacy orders mine automatically from my GP each month and texts me when it is ready for collection.

There’s more, but that’s enough for now.

Medication is reviewed at each neurologist appointment, this is my personal meds list as at March 2017.  It will change.

Just to reiterate, this blog is written by me with no science background and with very little knowledge about very complicated medication.  Please double check everything, and speak to medical professionals.   I may have misunderstood some information, so double check – thank you.

Crickey, I feel the need to make a placard …

*MEDS RULE* (but not in a good way)