The impact of early vs late Levodopa Administration
 

Thanks for this Olsen.

It's a pity that this paper is behind a paywall, because the question being asked is very important, and the causality issue is particularly difficult to assign here.

How does this paper deal with the possible cases of doctors putting those patients who are progressing most rapidly or who appear to have been diagnosed later on levodopa sooner?

Interestingly, perhaps, my own experience has if anything been in support of the paper: diagnosed 12 years, I initially went drug free, then rasagiline was prescribed, then ropinirole was added, before levodopa was added after 4 years, and I still have no sign of dyskinesia.

To take it further I've only seen one case of dyskinesia in my support group of about 20 PwP. However, let me point out that there are many confounding issues, not least, the self-selection of people who attend support groups.

John

Hi johnt,

Here is a link to a free copy of the research paper:

https://www.researchgate.net/profile...nistration.pdf

I've only had a quick look so far, but it seems to me that your concerns are valid.

Jeff

My strategy is to keep my life as normal and active as possible. The first four years I took Azilect and Amantadine. I skipped agonists due to concerns about compulsive behaviors. The last three years I have been on a low, increasingly frequent dose of sinemet. In the last six months, mild dyskinesias and wearing off have appeared. I am preparing for DBS.

I think it is important to consider Qol when discussing strategies to delay sinemet. There have been several people in my support groups who seem in total denial how unwell and limited they appear while proclaiming themselves delaying sinemet or even “drug free”, i.e., there is severe masking, very slow movement and often profound speech problems. They are most often very quiet men with energetic, earnest wives seemingly proud to be “managing” his Parkinson’s in a unique way. When the PWPD do finally start optimal treatment, the change is usually striking. Sad waste of precious time IMHO. On the other hand, some people especially those YOPDs who don’t develop compulsive behaviors seem to do well for a while on agonists followed by low amounts of stalevo. What is your experience?

it seems that a lot of advanced pd'ers who can't qualify for DBS, don't want it or can't pay for it are taking stalevo and a long lasting agonist like requip-xr and amantadine if you need it. the new controlled release carbidopa/l-dopa rytary might be able to be taken alone without an agonist, some people can't tolerate agonists and it can have too many side affects such as hallucinations, OCD as you get older.

i was diagnosed 15 years ago, was on regular C/L and CR from 2004 to present, minor hardly noticeable dysk. , just adding regular mirapex which has been a struggle but had to add something that lasted longer. Qualified for DBS, postponed it due to insurance uncertainty with TRUMP as president. took brand name mirapex from 2003 to 2004, no generic back then, had no serious problems but switched to C/L. There are a lot of new options now or soon to be released and expensive, once a day amantadine, sublingual apomorphine which has fewer side affects than injectable, inhaled l-dopa, l-dopa patch pump, 1 a day entacapone.

keep in mind, if you think the "cure" will be here in 5 years, take what gives you the best quality of life, which is why i switched to C/L from mirapex, back then, there was a lot of excitement and high expectations that stem cells, fetal transplants were the cure. then george bush became president .....
i remember a dr. levesque testifying before congress, he had treated i patient, i think his name was dennis turner, with his own stem cells and "cured" his pd on 1 side. unfortunately that treatment went nowhere and we all know now how strong the placebo affect can be.

in those days there was many more active posters on this board and "cure" research was discussed probably more than any other topic, noone thought it would still not exist 12 years later.
Beneficiary of Adult Stem Cell Treatment for Parkinson's Disease: Safaris and Swimming with Sharks
Levesque at Cedar Sinai: Parkinson's Breakthrough