Hi all im new on here have been dignosed in January .I am taking Sinemet plus 25/100 3 times a day but my nerologist added Ropinirole so i have taken my first one yesterday not really happy about the drug but if it helps great .Has eny one taken this and how did it effect you many thanks Ann
Good afternoon Ann3 … I am 71 & diagnosed in June 2023. I was taking 2 Sinemet 3 times a day. I have Restless legs. I also take 1 Ropinirole pill a day. No idea if it makes much difference but no adverse reaction to taking it.
Description. Ropinirole is used alone or with other medicines to treat Parkinson’s disease . Ropinirole tablets are also used to treat a condition called Restless Legs Syndrome (RLS). RLS is a neurologic disorder that affects sensation and movement in the legs and causes the legs to feel uncomfortable.
Best wishes
Steve2
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Hello Ann2
I have been on Ropinirole from the beginning of my medication regime which started immediately after my diagnosis over 15 years ago and have had absolutely no problems with it. Like all Parkinsons medication it suits some and not others and like all Parkinsons medication (or indeed any medication) it comes with a list of side effects which will affect some and not others, and the severity of its impact can be variable between individuals. Speaking for myself as I said, I have been happily using it for a long time and at my recent review my consultant and I agreed no changes were needed to the medication I am currently on including the Ropinirole.
Tot
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Hello Ann,
I’ve been on ropinirole for a couple of months and all is fine now, I did feel a bit nauseous for the first 5-7 days and was given anti nausea medication.
I’m glad that I persevered because I am getting a better nights sleep, I take 3 x 0.25mg tablets 3 times a day.
Good luck,
Dawn59
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Hello Ann
Dawn reminded me. I too had a very short period, just a few days, of nausea when I started taking Ropinirole and I too was prescribed some anti nausea tablets which didn’t entirely stop the nausea but must have helped - I remember my consultant saying at the time if I didn’t take the anti sickness tablet I definitely wouldn’t be able to take the Ropinirole. I had forgotten about that, but it was only for the first few days.
Thanks for reminding me Dawn, we seem to have had a very similar experience lol. Hope you continue to do as well as I have on Ropinirole.
Tot
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Thank you all for speaking to me appreciate makes me feel a bit better Do you know how long it is till you feel normal again from taking these meds and how long till they kick in big question sorry Ann
My bad nausea only lasted for just over a week before it started to wear off and I began to feel the benefits of being on ropinirole after that, probably 3 weeks.
Two months on and I’m not as stiff and don’t get as much pain/restless legs.
I think most people on this forum would agree that if particular meds aren’t making a difference to you then it’s probably best to try alternatives. Do you have a Parkinson’s nurse Ann?
Yes not sure what i think about him .Like it that you have not as much stiffness and less pain . My neck and shoulders and hands are where my worst pain is have else where but not as bad .Reading your message shows it is worth persevering for a month or two thanks Dawn
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Hello me again
Just thought I would make comment on your not being sure about your Parkinson’s Nurse. First and most obvious is that it can take time for a relationship, any relationship to be comfortable, this is no different - except it is really for him to make you feel comfortable.
Second I thought it might help if I told you a bit about my own experience. My Parkinson’s nurse wasn’t in post when I was first diagnosed, she came on board a couple of years later. I liked her and we did and do get on but we come at Parkinson’s from different stand points. She’s very much uses the medical model ie statistics and evidence. I am much more social model ie it doesn’t matter to me if I have a placebo if it works, it works. Also my background is varied but a lot of time was spent working with all sorts of disability so I knew quite a lot about Parkinson’s and I knew what worked for me, keeping a diary which she was forever suggesting to me, doesn’t - it absolutely bores me to death, She was forever saying, you do have Parkinson’s you know - as if I could forget and which I found exasperating. In short she seemed to think I didn’t take my Parkinwon’s very seriously. On the contrary I do take it very seriously I just don’t want it to always be centre stage in my life. as I hsve said literally dozens of times on the forum i am Tot first snd I happen to have Parkinson’s. I will listen to what she says and her advice is sound but Parkinson’s is happening to me not her and I will live with it my way. So I just stayed true to myself esd honest about how things were etc and we have gradually come to accept the other’s approach for what it is. I may not be a stereotypical patient but she now accepts my approach works for me and I do take it seriously.
My way may not be your way but the Parkinson’s Nurse should be an important part of the process. Note the word part. You are part of the process too. It is a 2 way street so your voice, however you use it, is as important as his. It’s a point worth remembering. How or what you do with that is up to you.
Tot
PS It’s been a long time since she suggested I keep a diary lol
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Afternoon Tot … I think it is a good idea to keep a health / Parkinson’s diary. I did keep one but I’m lazy & have stopped doing it. At the moment I am having some bad night’s sleep. How often do I have a bad night’s sleep. Yes, I should keep a diary.
At a guess I think I have 3 bad night’s sleep a week. Might be less, I don’t know. If I was asked by one of my medical team I would say I am sleeping badly.
An amusing task I have coming up is to keep a record of every drink I take for 3 consecutive days. So time drunk & measure how much I drink. Also I have to make a note of what time I pee & measure how much I pee. So if I have 3 pees a night that isn’t going to help me sleep well is it ? They have given me a measuring jug to use.
Best wishes
Steve2
I am not saying keeping a diary is not a good thing, steve2 only that it’s not for me - if it works for you great and good luck to you
You say you’re lazy about keeping a diary. I just find it boring. Our reasons may be different but diary keeping doesn’t seem to suit either of us lol
Tot
Hi Tot & Steve my nurse and PD doctor asked me to kept a dairy as i was getting to the state that i could not move, Well i kept one for 3 months (they thought that the reason I could not move was med wearing off) well i sent it too them and they sent answer back that it was inconclusive, 3 months ago I saw a new DR and he gave me px for Madopar Dispersible tablets. I can take these tablets an hour before my other tablets are due, i can only take up to 3 a day but they are Magic.
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How often do you see your nurse is it a phone call i have never met mine and contacted when in hospital with AF to see if meds caused one . The one thing i pick up is GP SAYS SPEAK TO PARKINSON NURSE , PARKINSON NURSE SAYS SPEAK TO GP ,I have a fab consultant who has said to ring her secretary if i need to see her i can really talk to her i feel so lucky to have a great Consultant
You will discover as you go along Ann3, that like just about ‘everything Parkinson’s’ everyone’s experience differs and that includes seeing your consultant or Parkinson’s Nurse. I see each of mine once a year, six months apart ie I’ve just seen my consultant (May) and am due to see my Parkinson’s Nurse in November. Apart from during the lockdowns when they were by phone, they are always face 2 face. In addition I have always been able to contact them in between if needed. Many have nothing like that much contact. I also think you should be aware that most GPs don’t know a great deal about Parkinson’s, they are after all general practioners not specialist - I think of them as a Jack of all trades, master of none -c they know enough to refer you but tend not to know too much about the meds or anything else - which is why your GP said go back to the Parkinson’s Nurse. I am not being especially critical of GPs, they themselves say it.
You are still in the very early stage and it is entirely understandable that you want to know how the system works, want to know if your experience is the same as everyone else and if it’s not, what do you do about it?
It may not be something that comes naturally to you but it pays to keep knocking on the door or jumping up and down if needs be. It can be useful to use the secretary to whoever to try and get what you want. For eg, if you can find out who the secretary is to your Parkinson’s Nurse email (or ring and confirm in an email what was agreed so you have a record) and ask the secretary to bring it to his or her’s attention that you have yet to meet him/her etc
In time things will settle down a bit and as you get more used to living with Parkinson’s and you will find you have an increased understanding of how you / your body reacts. For many if not most, this brings with it a confidence to manage their Parkinson’s in the way that suits them best. You can of course keep posting and asking as many questions as you like here on the forum - just don’t expect to get concrete answers or that we all agree, but the differing experiences can help you learn what is best for you and have confidence in that. For me, the most important part of your post is you say you have an excellent consultant. Use her as you need during these early days. She will understand this period of adjustment snd maybe even help you make contact with your Parkinson’s Nurse.
Hang on in there Ann3 - you will be ok it just takes a bit of time.
Tot
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Thank you so much so lovely to read this from you you are helping me alot to understand things ,as you said its early days .Thank you again Tot
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Thank yoi for your very kind words Ann3.
I don’t know if you have come across this yet, but I started this a few years ago and thought you might be interested in having a look. One of the best ways to live with Parkinson’s is to learn to live in the present, live for today. You can plan up to a point but when the future is uncertain, there’s a lot you can’t plan for and in the meantime, if you spend your life trying to second guess everything and worrying about a future that may never happen in that way, then you miss today - and this 24 hours is a once only, there are no repeats.