When to start on medication


#1

Hi all,

Here goes with my first post on a Forum of any sort. No doubt someone will direct me to somewhere where this has been asked before, so sorry if it has?

I was diagnosed with PD in Sept 12. I have a tremor in my left hand which has now progressed to my left leg as well. I tried Propanelol last year but this had no effect on the tremor and just slowed me down & made me feel fatigued, so I came off them. I have since been offered meds twice by my Specialist but declined on the basis that the longer I can do without the better? I'm wondering now if that is the right approach? Should I been taking what I'm offered to stop the tremor and make the most of the time I have, or should I wait till I really need assistance? The Specialist I saw last said there was no conclusive evidence that one way or the other was better, the first Specialist said staying off meds as long  as possible was a good decision.

Anyone have any thoughts?

Aylesbury

 


#2

Hello Aylesbury,

You make a good point. I was diagnosed in Oct last year and put on slow release patches - starting at 2mg and working up to 8mg per day. I didn't get on with the patches; they didn't stick very well and you have to find fresh skin every day. So in Feb I changed onto Ropinirole slow release tablets, starting at 8mg (where I left off with the patches) and increased to 10mg after a week. So far I haven't noticed any benefit from the meds. I'm waiting to be given the go ahead to increase the dosage again.

The point is, up to now I would have been no worse off not having any meds at all. Do I keep on going up 2mg till I reach the max of 24mg to see if they are of any use? Who knows I might hit 12mg and all my symptoms go away - wishful thinking!

I get to see the Neuro once every three months, hardly ongoing dialogue, and my GP seems to be "lets do as the Neurologist says". What I could do with is one of these Parkinson nurses, that other people refer to, as someone to talk to as issues arise. I have also heard of someone having been given a "Parkinson Pack".

Sorry to be rambling, but I find getting specific information very difficult.

As I see it, as long as you can do without the meds so much the better.

GTB

 


#3

Hi Aylesbury and GTB

when to start meds does tend to differ with neurologists some say sooner some say later, if i am correct ropinerole is what is called a dopamine agonist and on the other hand you have the levodopa preparations ie Sinemet and Madopar, at the point of diagnosis my neuro prescribded me Rasagiline (azilect ) when i went back to see him 3 months later i said i was not getting much relief from the azilect i was offered either a dopamine agonist or levodopa ,i was told that a dopamine agonist would not work as well as levodopa if i wanted maximum relief from my symptoms then levodopa would be the best option , i did opt for levodopa in preference to a dopamine agonist

Do you not have access to a parkinson's nurse in your area GTB ?

Can't say i have heard of a parkinson's pack

Aylesbury

when to start medication would be a personal choice  ,my neuro is under the impression that there is no reason to delay medication , personally i agree why suffer the symptoms when there are plenty of medication options out there ,i still take Azilect as well as the levodopa as most neuros believe it be a neuroprotective


#4

Hello, Aylesbury and GTB --

My experience is similar to Shelly's but with some differences.  I have been on Azilect approximately ten years.  It has never had any effect on my symptoms but may well be responsible for slowing the progression of PD.  Although I have had the disease nearly 17 years now, people I meet do not suspect it; my symptoms are still that subtle.

When first diagnosed, I delayed taking medication until the symptoms became bothersome to me:  shrinking handwriting, right hand tremor, impaired balance, inability to swim (legs a problem) or play the piano (hand coordination).  At this point, I took the reverse of the course Shelly took.  My PD doctor started me on Mirapex (a dopamine agonist) and exactly like your "wishful thinking," GTB, all my symptoms disappeared within a short time!  It seemed miraculous and lasted quite a while.  But eventually, as symptoms emerged over the years, I took higher doses of Mirapex and then added a small dose of Sinemet.  That's where I stand today.

I know that cases of PD vary widely.  I merely offer my own experience as one more to consider.  Optimism, exercise, and the right balance of medications (when you're ready for them) make the best way I know to fight PD.

Best wishes,


#5

Thanks for the comments GTB,Shelly & J,

The approach seems to vary from person to person. When I was diagnosed I was told nothing. I read about the PN on the Internet and arranged my own appointment, now every 6 months. I was given a P Pack (booklets & leaflets) only after a nurse heard me say to my wife that the Specialist had told me nothing other than 'you have PD'. On my last 6 monthly visit to the specialist he asked me if I wanted to continue coming every 6 months??  Perhaps he thinks its going to go away?

I intend to discuss the medication with the PN when I go next month. My GP knows nothing about PD, he told me twice I hadn't got it in the 12 months before it was diagnosed.

There seems to be quite a number of different medications that are used so I'll see what she says. I guess it's a case of 'suck it (or swallow) and see'. It just seems to be whatever suits you best as an individual?

 

Thanks again

Aylesbury

 


#6

Thanks J,

You have given me hope that by slowly increasing the meds I'll get to the point where the symptoms are alleviated.

Shelly,

No-one has mentioned a PN so far. I'll raise it with my GP next time I visit. It would be good to have someone to call up to discuss things, my GP, like Aylesbury's doesn't seem to know much about PD.

Thanks all for the comments.

GTB