Quote:
Originally Posted by johnt
Nigel,
I'm sorry to hear of your experience.
I'm a great fan of making changes in small steps, measuring the effect of the changes, and always having a previous state to go back to if a new regimen proves unsuccessful. I think that while a PwP is looking for a new stable regimen, changes need to be made frequently, perhaps weekly. Waiting the typical 6 months between consultations means that some PwP may never get close to an optimal treatment.
John
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Thank you John,
I was reduced from 16mg requip to 12mg over a 4 week period, then the drop was compensated by increasing my 4 x daily stalevo 150's to 4 x 175's. The change in my mental well being has been both dramatic and interesting. I am so much my old self now and could 'feel' the change happening, very weird.
I presented at the clinic such a positive change they decided to tweek the ropi down to 10mg. I had to tease it out of them but their rationale is the agonist is causing anxiety = worsening PD. (Something I raised 3/12 after dx)
So now I'm on 10mg requip xl and 4 x stalevo 175mg, I think the LED is slightly lower than the original.
It takes me an age to adjust dose alteration, eg I dropped to 10mg 3 weeks ago and only now am I hitting the withdrawals, it'll be 2 weeks more to see if I can live with it, at which time they may up stalevo again.
These are the positives of reducing requip xl for me
Improving peripheral oedema, foot discolouration
anxiety levels normal
nausea, gut motility improved
although stalevo increased now when I'd dropped from 16mg to 12mg I felt no worse on 12mg.
periods of greater fluidity which are increasing.
I'll post back with updates in case anyone is in a similar position.
One final point, it was the nurse specialists who have instigated this drop and the neurologist who ramped me up to 16mg and did so without ever testing me with taps, tuning, gait observation etc.