Diagnosed last year


#1
I have one neurologist telling me that my only major symptom is the result of my DAT scan and do not need medication; and another (the local expert) saying I am effectively riddled with symptoms and that I need medication straight away. The latter also tells me that Sinemet (ie Levodopa) will ease my back and side pains which are making enjoying life very difficult.

The majority view on this forum seems to be that Levodpa does help pain, but I have found a number of apparently respectable websites that say that it doesn't.

If Levodopa might help my side/back and neck pains, that would be reason enough for me to try it. If this is very unlikely, I am not sure what to do. I am wary of going on drugs too early.

Any experiences, knowledge or advice would be most welcome.

Thanks.

John

#2
My husband was first diagnosed two and a half years ago,and has got progressively worse.He was prescribed sinemet last November,but has not yet started.
The reason being that one doctor said stay off the medication as long as you possibly can.And the neurologist said its up to him when he starts.But that if he was losing his independance,then thats the time to start.Well,he has lost his independance,but is very wary of starting.Doctors do seem to vary in their opinions.
I wish you well

#3
Hi dj47,

Thanks for raising this question. I also struggle a lot with it and would welcome everybody else's perspectives on this.

Here's my own experience/approach on this: I was diagnosed around 18 months ago and am not yet taking Levodopa. My neurologist says that (a) this was a very controversial topic several years ago but that more recent research has shown that there are no real arguments to postpone Levodopa and (b) I should start taking it as soon as the symptoms justify it.

My perspective is that I fully agree with her conclusion that I should start taking it as soon as my symptoms justify it (I don't see any other alternative), but am unconvinced with her argument about there being no point in postponing it. I do fear the side effects and that there might be long term consequences (and frankly i haven't really seen any of these studies that reassure her so much). So, my own perspective (at least so far) is that I will postpone it for as long as I can manage without. In the meantime I am also trying to find anything that might be "wrong" or might be a possible cause of my PD and "fix it" (when "fixable" with minimal risk, of course) in the hope that it might help delay progression.

Warm regards and all the best to you,

lfs

#4
Hi

I was diagnosed 18 months ago, am now 55 but only started treament a few weeks ago. I have been given Madopar - Levadopa. But you read so many different sources that give you different advice. Is it more usual to have a dopamine agonist at 55 rather than levadopa in your experience? I have to go back to my consultant on 4th March (and I do feel much better) but I am wary of the longer term side effects at my age.

Your exoeriences would be most welcome.

Thanks

#5
Hi dj,
I was diagnosed recently and faced the same dilemma.
When I voiced my concerns, my GP and neurologist echoed the two opinions below.
Hope this helps.

There is no medical benefit to be obtained by delaying the start of treatment and there is some evidence that delaying it for too long can actually have an adverse effect in the long term.

It's a commonly held misconception that the drugs only work for five to seven years, and some patients conclude that they can choose which five-to-seven-year period of their illness this will be. They decide to delay treatment for as long as possible. But if they wait too long, a higher dose of medication will be needed sooner - to control symptoms that have been steadily worsening over the years. The side effects from the higher doses of medication will occur more quickly. In the meantime, the person and the family will have endured months (or years) of frustration and fatigue.

The drugs may appear to stop working but this is actually a result of the symptoms no longer being controlled by the dose. This calls for an adjustment of the medications or the addition of others

Myth/Misconception
Levodopa stops working after five years. This is
perhaps the single most pervasive myth about PD
treatment. Many people are reluctant to start taking
levodopa because of fear of “using it up.” Some
physicians also share this “levodopa phobia.”
Reality
Levodopa works for decades. Levodopa does not
treat all of the symptoms of PD, but it dramatically
helps many of the most disabling motor symptoms.
Secret
Levodopa has been shown to increase lifespan
and markedly improve quality of life.

#6
This thread is really helpful and so well expressed.
I really appreciate everyone's input, thankyou.

Does anybody have any research references? Maybe the PUK team does.

#7
I think Jacko's post very helpful and informative.
I just add a few thoughts:
Dopamine agonists have generally more side effects, especially at higher doses and are less effective.
Levodopa medication (Sinemet, Madopar, Stalevo)) can give you your normal life back for a while and their side effects are usually not a problem.
When to start is up to the patient , of course, depending on symptoms, but delaying start and suffer is no longer clever. You cannot look into the future. There is no guarantee of any good years later. You might have other problems later that affect your quality of life.
I find Sinemet helps relief my back ache. When the ache comes on I know I am going "off" within minutes.
I was quite happy to delay taking drugs initially and then start on a dopamine agonist, based on what was known in 1999, when I was diagnosed. If I was diagnosed now, I would be quite happy to start with a levodopa drug once the PD symptoms begin to affect my quality of life significantly. I would still keep the dose to a minimum and only increase this very slowly and just enough to keep the worst symptoms at bay.

#8
Hikoi, you could have a look on www.medscape.com and do a search using a selection of terms ( like: early start PD drugs, dopamine agonist versus levodopa) of Medline

#9
The best search engines are ones which have used meta analysises of this. Only coming from a nursing perspective, however, you would need a quantitative meta analysis from something such as MedLine. I know if you join the RCH you can access these journals. Ovid is a good one, as is Athens. I am not sure whether the public can access them or maybe have to pay to do so. Good luck, Im not up to searching just yet, still in denial I think :smile:

#10
RCN x

#11
Thanks Kate and Giraffe etc.

Ditto RCN x