Azilect was the first drug my neuro prescribed for me. Changed to a different neuro and he also prescribed azilect, along with 1/2 sinemet 3 times a day. It has been 4 years and still taking the same dosage, with no progression. Maybe the azilect is helping.

Cole50, Selegilene is part of my pd regimen I take sinamet 25/100 3x/day Amantadine 100 mg 2x/day selegiline 2x/day, comtan 3x/day and sinamet er at bed. This cocktail works pretty good for me. I still working full time. I am not good at keeping a tight schedual for meds but I have had some times with zero tremorrecently. Don't let lifes stress afect your symtoms good luck Alex

Cole 50.

I have seen 3 different neuros in the past years and found that each had his/her opinion on which drugs to use and they were all different. I believe that they should be willing to explain why they pick one drug over the other, the downside and then give you a chance to ask questions and then give you a choice. It is a good thing that you will get that chance with your new physician.

That is one reason I love this forum. From the responses here you can get an idea of what kind of combinations work and what doesn't work.

I am currently taking Azilect, Amantadine, Stalevo, Sinemet and Sinemet ER in different strengths at different times of the day and I have not changed my cocktail for 2 years other than the sequencing of the drugs.

Best of luck with the new physician and don't forget to let us know how the appointment turns out and what you decide to do.

Thanks, Shaky,

That is good to know going into this. Maybe this nuero is more open to giving a MAO-B inhibitor a try to see how it goes. I'd at least like to try it. So far nothing has totally gotten rid of the tremors and stiffness, just reduced it to more manageable levels.

I'll update you in Nov.

Hi Cole,
After having various symptoms off and on, in early 2010 my tremeors started and I was diagnosed with PD dominate left side of body. My progression became very aggressive once my tremors started and occasionally I began tremoring on my righ side and was told I was in stage 2. I felt I was on the fast track of the disease at that point

I started taking Azilect in Nov. 2010. Azilect by itself worked very well for about 6 months and then because of the pain of rigidity and my job I start on sinement. I don't want to give the Azilect up - just in case it helps stop the progression.

Let me just say here that the meds work very well for me. People cannot even tell I have PD. I commute 3 hours a day to work - 3 trains and am a legal secretary and have a very heavy and stressful work load, plus stess in my personal life from my mother with dementia. But at this point I was taking a lot of meds: 5 sinement and a neuro patch. I told her that my body had started doing something different - like a wave thing (it is different than tremors and it is hard to distinguish the difference at first). I asked her it was dysinkseia and she said no and added Comtan to my cocktail. I told her The "wave" thing was happening all along my left side from the toes to and including my chest area and head. She just blew off my concern. I felt she thought I was making it up.

In June of this year I weaned myself off of the patch because of weight gain and the wave motion became less, completely stopped in my chest and head and was only lightly in my lower extremities on the left side.

At my appointment 2 weeks ago, in one half hour visit, I was diagnosed as being under medicated and then over medicated. While in her office my left hand and leg started doing the wave motion. I showed her (it is only very slightly now) She told me it was dyskinesia and said I was over medicated and changed my med schedule, So in one/half hour I was diagnosed as being under medicated to over medicated. @##$%%%^^^%$##@@ I did learn at this visit that the Neuro patch makes the body think it is dopamine so I must count the patch like a sinement pill as synthetic dopamine.

I like the patch because it relieves me of the rigidity so I am trying it again from left over ones sent to me by my mail away pharmacy. They mail me so much meds.

For the past year I have asked her to prescribe Sinement CR and she won't - she says it is not really that good and she wants to wait because they are in the process of coming up with a new CR that is better.

Just writing this has me upset. I use the mail away pharmacy and they mail me so much meds so at such a fast pace that I have so much medicine that I am coming up with my own doses of what works for me! I started last week and so far so good.

She didn't want to prescribe the Azilect back in 2010 and she finally did when I refused to take any other med but Azilect.

I've had it this time I swear I'm changing drs.

whoa! the Dr rollercoaster! i sure sympathize with you debfrnj. im impressed that you are taking your dosing into your own hands. im convinced that this is the best way to go as i have had similar experiences in the past and realized the docs only pretend to know whats going on.....if you get a doc that manages to dose you well its by accident only.....they absolutely dont know a damn thing about these neurological disorders, they throw meds at it and walk away. right now i have 1 dr telling me its dangerous to supplement with o2 for pd induced restrictive lung disease and one dr telling me i need to supplement....HELOOOOOO ITS O2 GUYS NOT ROCKET SCIENCE...one doc saying i cant travel at altitude and one saying i can etc etc etc...until folks stand up to this nonsense the docs will continue to misdiagnose and over medicate...those of us lucky enough to have our meds dialed in will end up in the same position....meds that dont work. sillfox has maintained for years that we are all overmedicated and i tend to agree. but.....nothing will change until we force the change...non compliance is my weapon of choice right now...its feeble but its all ive got! more power to you debfrnj! stay tough!

peace

Brer T

PS: the new CR is better because they added an OH to the chain allowing them to re-patent it and charge the patent price again. Its better because it buys you doc's and big pharma lots of new toys like wave runners and boats so be happy knowing that the new CR will benefit the western sharks sooooo much. Maybe some day enough folks will demand better...until then its the new patent feeding cycle for us all with both meds and medical devices.


BT

Thanks, deb. I can relate.

Mine started left side, and this year has begun to move over to my right side. First symptoms appeared around early 2011, diagnosed in June of 2012 by my doctor, then confirmed by my neuro in Nov. 2012.

Since my neuro told me to double my sinemet dose, my wife has noticed some more slight head movement. I've also noticed, especially while standing a long time at church (3 hours) that I can feel my body and head waving around a bit. By over 2 hours, my legs feel flinchy and a little wobbly. Seems the only thing that helps them is to move around a bit.

I was always under the impression that dyskenisia happens much further down the line in taking sinemet. But this has me wondering if I am experiencing the early stages of it, especially since it started happening after doubling the dose.

This will certainly be something to discuss with my new neuro,. Hopefully he will be more open to seeing what will work. As of today, I've yet to have anything make me feel normal again, or totally get rid of the tremors. Medications have reduced symptoms, but not gotten rid of them. Obviously sinemet alone isn' t going to do the trick.

Maybe a MAO-B blocker like Selegilene is the answer. I don't know, but I won't know until I try it. If it is, I'd hate to miss out on something that would have helped me in these early years and reduce my dependence on sinemet.

Thanks for everyone's input.