Do you follow your Doctor's instructions on meds or do you experiment with dose and time.

[Bailey_Texas]

For me i would be in sad shape if i did not try things. I have saved a lot of meds from when i changed doses and types. I came up with my current dose cycle and my Doctor reviewed it and changed my Rx. I have now decreased my time from 4 to 3 hours and have improved a lot my down time has been cut in half. If it continues this way i will call and see if he will change my Rx. He has always done so in the past.

My current dose is;

1 6mg requip in the morning. 2 fish oil, 1 d3 ,and a daily vitamin.

1 50/200 ext release C/l and 1 25/100 quick release C/L every 3 hours 24 hours a day.

along with exercise and keeping busy.

[laglag]

I experiment a little but not too much. So far I haven't had a need to. I'm fortunate to have a doctor that listens.

[Bazillion]

As you know Bailey PD is a boutique illness not a one size fits all.Your Dr has to prescribe the meds but only you know with your lifestyle and commitments when is the best time to take them. Over years you know better than anyone ,As long as you don't over medicate and you are the best you can be stick with it.

[johntPM]

For PD drugs (for which I have 11 years of experience) I take the medics' "instructions" as advice, but I make the final decision. For instance, my medics advise me to take my drugs at the same time each day. But, I feel better with dynamic dosing, where I take a dose according to need.

However, if I were to get a new disease, at least initially, until I got up to speed with best practice and research, I would follow the medics' advice closely.

John

[racerCP in reply to johntPM]

I was prescribed an initial dose of 3 LD/CD 25/125 but taking a whole pill has been difficult as I have experienced extreme nausea and dizziness, so I take half a pill 3 or 4 times a day. It helps control some tremor but not completely. On stressed days I supplement with half a beer..Three or four ounces. Is this unusual to have alcohol to alleviate symptoms? I am sure I need to increase dopamine use soon. Any suggestions?

[Joanne_Joyce]

I definitely find it necessary to make my own adjustments of my meds and timing. I try to keep a record of my symptoms and meds to try to identify any patterns - e.g. when I have early wearing off or heavy dyskinesia. That helps me make my adjustments. However, I've discovered PD is often unpredictable. Seemingly out of the blue I can have a terrible day - either my meds hardly work or they over-work (resulting dyskinesia). I guess it is because we are not machines and our systems react to so many other things - stress, diet, ability to sleep etc.

[kommandokate]

As always...this forum is the best! A month ago I was allowed to increase my L/D and comtan to 4x a day at 4 hrs intervals. Recently I have had off-times at 3 and 1/2 hours. I will contact my Dr. Blessings to ALL.

Remember we are PWP...People With Power!

[Lionore]

Bailey, does that mean that you have to wake up twice during the night to take the c/l?

[Bailey_Texas in reply to Lionore]

yes i do it has become routine