I started ropirinole xl last week, on 2mg increasing every 5 days till I get to 8mg or 10mg. I have noticed an improvement already, but how much of an improvement should I expect? Will I be back to normal? I am not sure how to tell if 8mg or 10mg will be the right dose. The neurologist had said to me verbally to work up to 10mg but the letter said 8 or 10.
Medication is a finicky thing and it might take some time before you figure out what works and what doesn’t. I’m glad you’re already noticing some improvements though! Please do feel free to post and ask more questions. We also have a webpage on ropinirole that you can check out for a little more info.
Regarding how much of an improvement you’ll see overall - that depends. Some PWP find that their medication provides them with a normal or near-normal experience. Others do not see such a drastic change, but are still grateful for the additional normalcy that the medication brings. Everyone is different and their bodies respond differently, so it would be quite difficult to say what ropinirole has in store for you.
Stay positive, keep an open mind, listen to your body, and keep open communication with your doctor. Only you will be able to decide how the dosage makes you feel. If you’ve been advised to go to 8mg or 10mg, then go at least to 8mg and see how you feel - and talk to your neurologist. Going to 10mg may not be needed if 8mg works well for you. You can also go to 10mg, just to try, and then make a decision based on how your body feels. How you feel.
You’re also welcome to reach out to our helpline with any questions or concerns you may be having about your medication. Our advisers would be more than happy to help.
Ropinirole was definitely effective for me in making my movevements more normal, eventually I reached about 16mg a day within about 2 years of use as it took more to get the same effect, which is when the most serious side effects for me set in and I quit it altogether cold turkey (it was either that or check myself in somewhere). Looking back, by the time I hit 10mg some compulsive behaviors should have been more obvious to me, and when I reached my maximum, my reality exageration became hallucinatory and serious. If you read up on the side effect of Ropinirole, you will see these are not uncommon, and I believe it’s helpful to have someone close to you monitor you for them (not just your doctor), as you may not even realize they are getting bad until they are very serious like me. Better still, keep your dosage to the minimum you think you need to help your movement, or don’t use it altogether and let other meds do the work, like Carbidopa/Levedopa (also called Sinemet) which for me at least does not have nearly those side effects at all. Bottom line, it works, but be very careful with it in my view - your doctor should probe for behavior changes, but by the time he sees them and/or you are honest with him about them, it could be serious, but it does work.
DHP - sounds like you have had a bad experience with the ropinirole. I have spoken to my family to keep an eye on me to watch out for side effects/changes in behaviour. Because of my age (53) the neurologist wanted to start me on a dopamine agonist rather than levodopa.
yes, I was 59 when they started me on Ropinirole for the same reasons, and to hold in reserve the levodopa therapy, which is of course conservative and made sense to me at the time. That said, if I could do it over again, I would never have taken it, I’m using other meds and supplements now for movement that are getting me close enough to the same place without the serious behavior & hallucinatory impacts. Neurologists prescribe it because it works, and I believe they think they can catch any such side effects in time to prevent major damage - financially &/or emotionally to our families - sadly in my experience (& many others here) that was not the case. Very good plan to ask your family to watch you, suggest you may want that to include your spending patterns as well. Wish you the best with it.