longetivity of medication(s)
 

Hi everyone,

I don't get on this website that much but mainly because I was stable for 11 years before needing to change my medication. I was diagnosed when I was 44 years old and am currently 56. For those 11 years I was on 1.5 mg of Mirapex three times a day and Artane 2 mg. twice a day.

The only thing that I can think that helped me during those 11 years is that I REFUSED to let stress into my life. I whole-heartedly believe that my Parkinson's is directly related to the stress that I was under. I can tell you the exact day, and the exact hour, that my tremor started! I do believe that it would have manifested itself somewhere down the road, but I also believe that it reared it's ugly head when I was 44 due to the profound stress I was under.

Since I was diagnosed, I got divorced and moved from Texas to Chicago. The divorce itself was a huge reduction of stress. In fact, my symptoms were so under control for those 11 years that my family doubted that I even had Parkinson's.

About a year ago, I was finally put on Levadopa. My biggest complaint is that I freeze, especially in the mornings & evenings, and also when I am tired. I still try to limit my stress knowing how it reeks havoc on my health.

My question is if any of you have had such longevity with medication (and specifically Levadopa) without having to change OR increase your meds? Am I not being realistic to hope that I'll have another good 11 years? If not, how often do you have to increase or change meds? What can I realistically expect? Any and all answers are appreciated. Thanks!

proudest_mama,

You ask: "Am I not being realistic to hope that I'll have another good 11 years?" I think you are - provided that something else doesn't get you first.

It is likely that an up to now slow progression is a good indicator of a slow rate of progression in the future.

I was diagnosed at 49 and I'm now 11 years post diagnosis. My drug regimen for the last 7 years has roughly been:
- rasagiline, 1mg;
- ropinirole, 16mg;
- Stalevo, 4 x 75mg.
I say "roughly" because, although I take the rasagiline and ropinirole consistently (in the morning), I take my Stalevo on an "as needed" basis: if I'm on a good "on" or don't need to perform, I delay taking the next dose; if a dose has been lost, perhaps because of food interactions, I take the next dose early. (Note: many doctors will argue that a strict timetable should be adhered to. I think, at least in my case, they are wrong.) Apart from a few outliers, this has led to me taking either 3, 4 or 5 75mg Stalevo tablets per day. At the start of this 7 year period it was 3 sometimes 4 per day, now it is 4 sometimes 3 or 5 day.

During this time my motor symptoms have remained fairly constant. However, my non-motor symptoms (e.g. constipation, posture, drooling etc.) have got worse.

John