I have a question concerning the dosage of ropinirole: Is there any advantage to using the minimum effective dosage, that is, the dosage at which the targeted symptoms of PD are alleviated? For example, let's say one patient takes 8mg daily for 1000 days and another takes 16mg daily. Does the total quantity of ropinirole taken over the 1000 day period have any effect on ropinirole's subsequent effectiveness? Will the efficacy of ropinirole wear off sooner for the 16mg/day patient?
I ask because my neurologist prescribed ropinirole thus: 2mg/day for 2 weeks, then 4mg/day for 2 weeks, then 6mg/day for 2 weeks and so on, up to 16mg/day for the final 2 weeks. Now I'm at 8mg/day and my goal has been achieved: my tremors have diminished sufficiently that I can play the guitar and clarinet. And so I wonder, if I stop increasing the dosage at 8mg/day, will ropinirole be effective for me longer than if I upped the dosage to 16mg/day?
It is good to hear that your tremors have diminished and you're able to play the guitar and clarinet again :-) Dosage can affect a medication's effectiveness over time, but we'd always recommend speaking to your prescriber before altering your medication. You are very welcome to give us a call on 0808 800 0303 and speak to one of our Nurses about this.
Of course I won't make any changes to my med regime without first consulting my neurologist! In fact I sent him a copy of the same message. But lurking about these forums during the last couple of weeks I've noticed a very high level of general knowledge, so I thought, why not ask?
I suggest that you search all posts about ropinirole and dopamine agonists and I am very disappointed that the response by PUK did not even mention the possible side effects. There are many examples on this forum as to the effects of such medication and I can attest to that!
Benji and Twinks, you're absolutely right of course, the potential side effects of ropinirole can be devastating and both patients and caregivers should be well aware of these possibilities before starting treatment. My neurologist was quite emphatic about this. However...
For me it's working wonders and so far there has been no weirdness. My PD was diagnosed 18 months ago (DaTscan) and 6 months ago I began taking 1mg daily of Azilect with no discernible improvement. Adding ropinirole has made a big positive difference, so naturally I'm interested in having the positive effects last as long as possible.
I'm so pleased you're reaping the benefits of Ropinirole. It just goes to prove how differently we all react to the same drugs I know others on the forum who also get on well with it. When I was taking it, the higher the dose became, the more weirdly it affected me, (swollen ankles, eyesight deterioration, compulsive buying and generally feeling strange). I increased from 2mg. to 12mg. in the course of a year though......not quite as quickly as you. Hope it continues working for you. All the best.
I've spoken to my neurologist and he says that it is definitely best to take the minimum dose that you feel to be effective and save stronger doses for when the original dose loses effect. And to be vigilant for side effects!
I am on the same dose as you, 8mg/day Ropinerole, which I take as slow release. This dose has eliminated an involunatry "twitch" in my right leg,and night time muscle cramp but leaves me a bit slower than I would like doing "fiddly" tasks. I have been diagnosed for 2 years and 3 months. I dont know the answer to your original question as I have not tried higher doses. The guidance from my Consultant and PD Nurse seems to be to stay on the lowest dose which is effective in controlling these symptoms to "nuisance" levels, and watch out for obsessive / compulsive side effects. Sorry I could not answer your question fully but thought I would post a response as we are at a similar "stage".
Hi Louie Louie - I was started on Ropinirole XL slow release when I was first diagnosed nearly seven years ago, and like you my body accepted them really well with no side effects, my medication was increased steadily over those years and I'm still only on 18mg a day, and have just been prescribed Sinimet to run alongside, and my body is accepting both medications. Some people have had terrible things happen with Ropinirole we should consider ourselves very lucky in that we can
I'm glad to hear you're doing well. My neurologist prescribed ropinirole at 2mg/day for 2 weeks, then 4mg/day for 2 weeks, then 6, 8, 10, etc. up to 16. Now I'm on 12 and it's definitely helping. However, I was first diagnosed only 18 months ago and it seems to me that 16mg/day might be excessive because it would leave me little room to increase the dosage as the effects gradually wore off. Then again, maybe taking 16mg/day, the effects won't wear off for a long time; that is, maybe 8 a day would be effective for 2 years, 12 a day for 2 more and 16 a day for 2 more, making a total of 6 years effectivity. The question then is, would taking 16 a day from the start also give 6 years of effectivity? No one seems to know, though I think the rule of thumb is to take the minimum amount that satisfactorily improves your symptoms.
I thought about this for a while and, being an analytical kind of guy, wrote a web page describing a test that might help answer this question: http://visca.com/parkinson/ropinirole.html
Thanks for both your posts Sheila and Louie Louie,
I've just been thinking about my meds.
I started Ropinerol XL in Sept. I'm on 4mg at mo and will be on that till see consultant in April. I was hoping it would help with the stiffness in my hand for writing. Hearing about your guitar playing makes me think a higher dose is needed. Did you see results immediately or after a while? I've no major effects from it.
Also Sheila, what does Sinimet help with?
Thx.
I have had PD for going on seven years now and been taking Ropinirole XL slow release for 6 of those years (I refused to take any meds for the first 12 months) I agree with what your saying LL, taking more meds when you don't feel as if your body needs them in the early years then gives you more scope in the later years, don't know if that's the way to do it, but it's working for me. I feel lucky as my PD is slowly advancing whereas in some people it can advance more quickly, I go by how my body feels to see if I need more meds, I then contact the PD Nurse/Neurologist for advice, I have managed to keep my meds to a minimum ie. over 6 years gradually increasing to 18mg a day, I now also just recently started on Sinimet 150mg a day as well and they suit me fine, they have helped as I was getting stiffness etc(all the things that go with having damn PD!) back, it gives you a better quality of life as the PD gets hold. That's my theory anyhow and it works for me (for now), we are all different in the way PD treats us so just go with what your body tells you - Sheila
As per my neurologist's advice, I took 2mg/day for 2 weeks, 4mg/day for the next 2 weeks, 6mg/day for the next, etc. This week I'm at 12/mg day. Some time in the 4-6mg/day range I started being able to play the guitar again, the problem with which had been that the pick kept falling out of my hand. Also faster rythms were sloppy. During that same phase, my wife said my facial expression was getting less Parkinsonian. However, I haven't really noticed much of a change progressing from 6 to 12mg/day. Still, I'm going to continue the increasing dosage up to 16mg/day and see if there's any other improvement. If there isn't and my neurologist agrees, I'll start going back down the scale (16..14...12, etc.) until the symptoms come back.
Have you tried doing yoga? I think I may be less stiff now than I was when my PD was diagnosed 18 months ago. It for sure can't hurt! I do half-hour stretching and flexibility exercises 4-5 times a week. I should mention it's important to find a good teacher, because some instructors push you too hard. My opinion is that gentle yoga is best for Parkinsonians.
Thx for the responses,
I'm aware of the obsessive side effects, husband is keeping an eye. I do yoga regularly , putkisto method.(deep stretching ) and a popping Dance class. These were all recommended by my PD nurse. I always feel better after.
I'll see my PD nurse in Jan before I see consultant in April. I'll have a chat with her about meds. I agree that not overdoing meds early on is a good idea. I feel it gives you more room to manoeuvre as things progress
DivineR .
