I finally got seen by a Neurologist yesterday after being diagnosed in January. Was a good meeting, very thorough and he’s an expert in his field. Now, things got slightly heated at the end when medication was discussed. He wanted to start me on levodopa straight away 150mg for a week rising to 300mg. I went in wanting to try rasagiline first, I know it’s a much weaker PD medication but some patients report good effects on it. His view is there is no benefit in delaying levodopa, in fact it’s detrimental. I was concerned about dyskinesia which he says will happen whether I start it now or 2 years down the line and most of his patients tolerate it well. We agreed on a compromise of me being on rasagiline for a month then adding the levodopa if I want/need? Just after some advice from PWP on their experience of levodopa, wish you’d started it sooner? Wish you’d held off longer?
I took rasagiline for a couple of years before starting on levodopa as this was recommended by my neurologist. For those first two years the motor symptoms were quite mild but didn’t seem to be improved by the rasagiline but it did make a big difference to my anxiety which had been pretty bad before that.
At then end of those two years the tremor was becoming much more troublesome and I asked my neurologist for stronger medication. She recommended a dopamine agonist but my own googling had suggested that levodopa would give better symptom control and recent research seems to suggest that people who start levodopa earlier get a better overall quality of life when looked at over the next 15 years or so. My neurologist agreed to prescribe sinemet and after some tinkering with doses and timings it now works very well for me and has kept my symptoms stable for more than a year now.
Hope this helps
I think Parkinson’s is more accurately described as a syndrome [set of symptoms] rather than a disease. For that reason it manifests differently in different individuals and likewise some medications work better in some individuals than in others. Neurologists are inclined to gravitate towards medications that work best in their experience in the majority of patients. However the patient themselves are often the best judge of how well a particular medication works for them. A Neurologist can help show you the way but quite often you have to navigate your own path. Good luck.
ps make sure you have the Parkinson’s UK booklet entitled Drug treatments for Parkinson’s
Thanks for sharing your experience, do you continue take rasagiline alongside your sinemet?
The research looking at the big picture over 15 years highlighting benefits of taking levodopa early is interesting, certainly that was my neurologist’s point of view. He said it was a myth holding off longer is better, and certainly quality of life now is very important.
Hi @DB123, Yes I still take rasagiline as well as sinemet.
The research papers that come up when googling still seem to be confusing but I believe that more recent ones support taking levodopa early. My neurologist didn’t hold this opinion but she’s not a PD specialist and I don’t think she is entirely up to date with this. At least was happy to prescribe what I wanted anyway rather then insisting that I start with dopamine agonists.
This is one of the many papers I read to inform my decision:
It can also bevery useful to be aware of The NICE guidelines when consulting a medical professional.
Thanks all, one thing is clear as you all say, there is no one size fits all approach. It’s a total minefield and I’m getting even more confused than when I started looking at this, My first reaction was there was no way I wanted dopamine agonists, gambling away all my money doesn’t sound fun (rare side effect I believe but it happens). Then there was no way I wanted the dyskinesia associated with levodopa but I have a top Neurologist at a leading hospital tell me I’m crazy not going on it straight away. I was hoping I’d start noticing effects from the rasagiline by now (my main symptoms are exercise induced foot dystonia and left arm pain and rigidity) but at the moment all I’ve done is sleep most of the week since starting it. I have been relatively ok about my diagnosis the last few weeks but I can feel the stress coming back now I’m trying to research the best way forward.
We are in a similar situation. My wife (40) has been diagnosed with Early On set when she was pregnant 4ys ago. We stayed clear of any medication as this was suggested by our neurology prof. from Queen Square Hospital in London . At that early age it’s better to postpone any drugs as much as possible.
Unfortunately now she is starting to struggle with her walking, starred to drag her left leg behind her pretty bad. The neurology Team said that unfortunately the disease has progressed and we will need to start medication. The prof. said it’s our choice to either go with low level of ldopa or rasagline. I asked about Mucana Pruriens but sadly basically no one in the NHS will recommend or go for it. They shy away from it, because it’s not certified by the NHS, the dosage it harder to control and bla bla bla. They are not even gone try.
The main problem with Ldopa is of couse dyskinesia and as @DHP said, this can be a big issue to manage. I can’t imagine myself or our 4 yr old son to watch my wife with dyskinesia. At our last consultation in the hospital I showed them a print out from a medical paper about Ldopa working for 5ys and then a high procent of ppl will develop dyskinesia and asked them: so that’s it? They kind of ignored my question as I felt they wanted to say: well what can we you tell you. ¯_(ツ)_/¯.
We started with rasagline she is 3 months in, absolutely no effect. So at this point are not sure what to do. It’s terrible frustrating to see that in the last 50ys there has been no new drug to fight Parkinson’s. 50ys!
@DHP Where do you get the Mucana Pruriens from, also how did you figure out how much to take?
Thanks both DHP and Mikey.inc.
DHP, yeah my arm pain is similar, left shoulder, Thanks for taking time to share those links I’ll look at them today, MP is something I’d looked at and decided not to go with for a few reasons. 1. With a herbal supplement I have no guarantee of quality or production standards compared to a regulated drug. 2. The dosing confused the hell out of me . I’ll certainly relook at it.
Mikey.inc, firstly, sorry you and your wife are going through this. My neurologist gave me a very rosey picture which doesn’t seem to pan out on these boards “normal lifespan, no problem working for years to come, deep brain surgery once you have issues with the drugs 10 years down the line”. It was a very good first consultation but he totally dismissed my concerns about dyskinesia, basically saying his patients tolerate it . There’s also the same shrug your wife got, like what else we can do . Maybe that’s it, what else can we do!? Certainly if I could get back hiking , jogging, gym in the next few months it would be a definite improvement on my quality of life.
Do you have a link to that print out you showed your neurologist? What % of people on Levodopa actually develop severe dyskinesia? I’ve been trying to find figures but can’t .
Also, anyone on this forum on long term levodopa use that have no issues with it?
Well after a week of trying the weakest PD drug available, rasagiline, I’ve progressed worse in 7 days than 6 months since my diagnosis. I’m stopping rasagiline tomorrow, I’ve never read any negative effects, it either helps or it doesn’t but has neuroprotective benefits but in 7 days I’ve developed consistent tremor which I didn’t have, I can’t even get off up the couch and my arm pain has me almost crying in pain, and this is all 100% worse in 7 days on rasagiline. There’s absolutely no scientific reason why I’ve reacted so badly but it is what it is, I refuse to put my body through any more pain. I’ve never read anything bad about rasagiline so I don’t know but whatever the reason it’s back to the drawing board. I’m going to give myself a break for 2 weeks to see if I can get back to where I was a week ago then it’s a simple decision, levodopa or dopamine agonists.
DHP, thanks for your contributions. Ambroxol is a no go for me until it’s passed phase 3. Taking 30 plus tablets off label isn’t an option for me right now, if I can’t tolerate a well proven safe mild drug like rasagiline my confidence to go experimental isn’t there, let’s hope exenatide proves successful, 1 injection weekly for slowing progression is a dream, fingers crossed. Ambroxol phase 3 trials could also lead to a breakthrough, there’s lots in the pipeline but I’m feeling pretty defeated right now.