Quote:
Originally Posted by dilmar
Soccertese
I have taken a long time to reply, sorry. You know that thought " I'll attend to that tomorrow.....
Background:
I started requip as my first medication 3 months after diagnosis. I tritrated up using starter pack and it took a long time for my body to fully adjust Like months. The tiredness got me a bit and some nausea but I persevered. When I was able I changed to the long acting med which is soooo much better I find. Easy to tolerate even without food and smooth delivery. I think the research is it last about 16 hours. I now divide the dose ( 8 mg am and 4mg about 5 pm). I noticed I was getting swelling in my hands when I took it later at night so I take it while still active. It gives me good night cover I think tho sometimes I need Sinemet for my tremor part way through the night.
When I changed countries I could no longer get the long acting med as it is not approved here!! so it was back to short acting three times a day. I hated it and the fluctuations I got on this regime. Added to this a general dislike of agonists by many NZ neuros including mine who decreased the dose only 2 -4 mg but it was horrid - I was an incontinent crying mess for a while. There was no suggestion of a replacement med.
I had been on the requipXL 5 years and it took a huge toll on my body this change. A holiday in Turkey and finding I could purchase XL over the counter was my salvation. My body sigh of familiarity and relief was almost audible. I now have to import it and bite my lip at the cost. I get generic which I find is fine.
So what can I add that could be helpful:
Agonists have their place but take time to adjust to and should be titrated up very slowly
Long acting is a different med experience to short acting
There is a therapeutic level needed to reach before deciding if they are useful
They do cause some oedema and of course the compulsive issues v important to know about and watch for
I still have wearing off usually after 3hours but manage to keep to 500 - 600 mg l dopa in 24 hours. (Thinking of adding entacopone). I'm in my 8th year since diagnosis now. And also take selegiline 5 mg each day.
Soccertese it's a difficult decision about using agonists with no clear answer.
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thanks a million dilmar, your experience/opinion is very helpful. and thanks for your opinion nigel. i gotta extend my on times. luckily my insurance will pay for XL with prior auth. just as an aside, i know a number of people with pd for more than 10 years who seem to be doing very well, met them at a spinning class, and are all taking stalevo, amantadine and requip, not sure which formulation though.
a few questions for anyone taking the requip xl
1. what generic are you taking and do you have a preference? i only ask because there are different generics.
just curious dilmar, what benefit do you notice from the selegilene? i used to take it years ago before my symptoms became a lot worse and the main benefit was an energy boost for 1-2 hrs, but eventually stopped. how long have you been taking it?
thanks again.