My Neuro really was no help in relation to meds, infact it was hardly even discussed. He just said I can take some if I wanted but that as my symptoms were fairly minor at the moment it might be better to hold on, to which I agreed. Now, after having read a fair bit I am muddled and confused. I'm certain this is a regular forum topic but does anyone know of any proof one way or another about whether taking drugs early controls or slows down progression.
My fear is that if I take them too soon they'll have a limited life and I'll simply be upping dosages every year or so. Then again, if I don't take them from now and wait for things to get worse am i foolishly battling with Parky for no gain as my symptoms will be getting worse quicker?
Has anyone gone without for years? I read that after a while it's hard to work out what is a Parky symptom and what is a drug side effect.
Bottom line, I'm afraid to enter the meds cul-de-sac...
I've was diagnosed late 2010 and my only official PD med is Azilect. I lead a normal life and still walk 18 holes of golf three times a week. I plan to stay med free as long as possible. My mentor is a friend who has had PD 8 years and has only started taking Sinamet (occasionally) since last year. Regards. Roman
“I am a great believer in treating patients both early and optimally. [...] normalising dopamine levels early allows patients to maintain high levels of phsyical function and once they lose this functionality it is very hard to salvage it. I must stress that this is a personal view and no trial has directly addressed this issue, although trials such as ADAGIO [http://www.parkinsons.org.uk/research/research_news/adagio_clinical_study_claims.aspx] show some supportive data in this direction"
You're right Digs that it's a frequent topic, even in the short time I've ben on this forum. I think I'm surprised that "no trial" has addressed this: it must be in everyone's interest to get this right.
As you can read there, lots of folks seem to be of the opinion that there is no serious drawback in starting early with l-dopa (and clearly that's the point of view of my neurologist). Unfortunately, nobody really mentioned any concrete piece of research on this subject.
My personal take on this tricky question: almost 2 years after dx, I've been lucky that my symptoms are still very light. I'm taking Azilect (plus a bunch of other stuff), but not yet l-dopa. I presume that when my symptoms will become worse I'll have to start l-dopa. But I'm not in a hurry to start before that moment. Not unless I see some evidence that suggests that starting before you really need it is beneficial - and I haven't seen it so far.
some points of relevance: C29 It is not possible to identify a universal first-choice drug therapy for people with early PD. The choice of drug first prescribed should take into account: • clinical and lifestyle characteristics • patient preference, after the patient has been informed of the short- and long-term benefits and drawbacks of the drug classes. NICE Level D (GPP) C30 Levodopa may be used as a symptomatic treatment for people with early PD. NICE LevelA C31 The dose of levodopa should be kept as low as possible to maintain good function in order to reduce the development of motor complications. NICE LevelA
levadopa and DAs might be neuroprotetive, might be neuro toxic. a proper test is probably unethical so we might never know. the little evidence seems to point both ways.
How much do the drugs reverse symptoms? My situation is that I have deteriorated very quickly over the last year and I have to wait 3 months for the DATscan and appointment before I find out whether they will do anything or even if it is parkinsonism. I am worried about the level of deterioration over a relatively short time and I am desperate to regain some sort of normality. My neuro-physio says that it is atypical of normal PD and that also worries me. I don't have much of a tremor but my balance and mobility are severely affected and I've gone from being able to do a huge amount of exercise just over a year and a half ago to struggling to walk with crutches. To be honest, I'm scared.
IT seems to me that there may well be no right answer to this one. I have been dx over 18 years, since the age of 39 and worked for 16 of them in a stressful job which included a lot of UK travel and being away for up to a week at a time. I started on meds on dx and have taken them ever since of course and yes, in increasing dosage. Now, I take a lot of medication every day, not only for Parkinson's but also for other health problems, about 19 pills every day and some days more if needed. Yes, I have had some side effect problems but I would have had some health problems - maybe different ones - anyway in 18 years.
More important is the probability that without the meds I would have had a harder time in those 18 years. Even now, although of course my PD is worse, I am still very functional and keep busy, although I have time to relax as well , which is much more necessary now.
The other factor I think about is the 'don't know what's round the corner' factor. You could struggle without meds for the sake of the future and ... who knows what might happen. So for me, 'use the meds and make the most of today' has been my mantra. Is it right for me? Yes, because that's what I have done. Is it right for everyone? Not necessarily, I'm just sharing a few thoughts and hoping they might be helpful. But I can't offer anything that looks like an answer.
i suppose the simple answer to your question is that its entirely up to you in other words personal choice, i was dx 10 years ago and chose not to take the meds for the first 4 years but now i could not function without them but i am still pretty active i can still do all the things i did before except the job i loved had to give it up but since the stress levels have gone down my meds seem to work much better, just go with your own instinct what you feel is right for you and stick with it and if you decide not to take any meds just yet you will know when the time is right for you good luck, sue.
