I was diagnosed 4 weeks a go.
46 years old in shape
Neurologist put me on 6mg ropinirole.
Main issue I have is a right hand tremor.
Since taking the meds I see feel fatigued an hour
After getting up ,could that me the meds?
Also notice face feels tighter.
Currently doing 30 mins a day exercise
Any advice thanks
Parkinson's medications are for symptomatic relief only. So if a medication is making you worse it should not be taken.
In addition, ropinirole is a dopamine agonist. This is a very dangerous class of medication. It should be a last resort for Parkinson's not a first resort. Potential adverse effects of dopamine agonists include impulse control disorders such as compulsive sex, gambling, eating and shopping. Dopamine agonists also commonly cause orthostatic hypotension - loss of blood pressure upon standing, with possible loss of consciousness and uncontrolled fall.
I am not sure if you need to taper the dose gradually after only four weeks of use. You will need to check on that.
Finally, unless you specifically excluded the other possible medications, there is something wrong with an M.D. who prescribes this kind of medication as a first choice for Parkinson's.
Thanks for the reply
I was taking 2mg the first week 4mg the second week and now 6mg.
I also have heavy feeling in my legs and dizzy when i get up.
Dizzy when you get up is a clear sign of orthostatic hypotension. You must get off this medicine as quickly as possible, lest this problem get worse. I suggest immediately dropping down to the 4 mg dose. If you do not suffer any withdrawal symptoms, then drop down to 2 mg dose, and then to zero.
Doctors are propagandized to believe prescription meds can do no harm and nonprescription treatments can do no good. Your neurologist may not be happy with you getting off the drug and may try to blame the orthostatic hypotension on Parkinson's. Do not fall for it.
Here is an important reference: jamanetwork.com/journals/ja...
This problem will not get better over time were you to continue to take this medication, you would only get worse.
I personally suffered severe disability for a month after taking two weeks of a dopamine agonist - unable to stand without fainting most of that time. Fortunately now recovered.
So what are my other options I should consider
Taking instead.
Thanks
How bad is your tremor? Is it mild ? Can you live with it ?
I had mild symptoms and the neuro immediately put me on Miraplex which almost destroyed me. When gradually I got off of it I felt that I got my life back. I don’t know why doctors immediately give you drugs rather than observing you
Tremor most of time is mild . I can live with it. Mainly When I get anxious it gets worse.
At such time as you need symptom relief your choice of timed release levodopa formulation, or an MAO-B inhibitor, would be the way to go.
Meanwhile you are in a great position to try non-prescription interventions. HIgh dose thiamine (vitamin B1) is helping me and others. Improvement from mannitol is also being reported. Others have found a version of B3 helpful. Qigong has helped me considerably.
Yep thats what they do!
25/100 Sinemet extended release (or other LDopa brands) is easy to deal with and I agree with PB that agonists seem an unnecessary risk for any new PwP. I told my neuro no agonists please. They prescribe them for early onset PD but since they do not appear to be working well for you, why not try Ldopa and aim to keep the dose as low as you can as long as you can.
Ropinirol
I guess there must be a lot of people who do well with it , because it is prescribed a lot. I am not a doctor so I dont know anything except my experience with it. I am allergic to it but the severity of this did not show immediately. It caused, rashes (dark brown) on my legs and arms, all the hair on my legs, hands feet and arms fell out and legs swelled up, leading to cracked skin and infection. I started, falling asleep in the middle of a sentence. Had to give up driving,constipation........
I am slowly weaning off of it (two years now) with increased Ldopa . All above side effects are diminishing big time. I may get my license back.
WARNING do not suddenly discontinue, reduce only at the guidance of the doctor.
depending on the amount you have slowly increased and now take , a sudden discontinuation can have severe effects including death. No kidding.
I was on ropinirole for a while, took myself off it with Doctor's advice.. Light headed, felt like throwing up all the time. Doc then put me on pramiprexole, no issues, also on sinemet. I keep very active, walking, climbing, etc...
I'm working full time piloting ships and driving ASD tugs.
Keep active!!!!
Had to stop using Ropinerole Patch after six weeks due to severe fatigue, I stick to my Sinemet because I tolerate it well.
Theyakin
Its dangerous to ask questions like that, you will get all the dire stories and probably very few of the good news ones. :). So you have had 6 people write of the horrors of agonists but they are still prescribed so they obviously work for many people as well.
I was on ropinerole from about 6 months after diagnosis. It was my first med. Though I found it made me tired i persevered and i continued on it. It was better when I switched to the extended release, I really liked the day long cover I got. It was and is particularly good for movement. I have since changed to another dopamine agonist - pramipexol which is controlling my tremor very well. Im also on sinemet too now. (10 yrs diagnosed)
I would not stop a med on the advice of a few people on a forum. Your are young and that is why the neurologist gave you a dopamine agonist. I hope he told you about the compulsive behaviour some people develop. Important to be aware that it could happen to you. All our meds are inclined to lower BP, agonists may be slightly worse than others.
What I would say is:
Do you need meds yet? Though there is no advantage in trying to hold out for too long, it is usual to begin taking them when PD is interfering too much (that is often with in the first year). Now you have started I would not stop however but would keep to a low dose.
When starting any med go low and slow, ie small dose and increase slowly
If you aren't tolerating an increase then go back to the smaller dose for a while longer
These are strong meds, it takes weeks and months for your body to truely adapt to them so give it time.
Learn all you can about meds. There are some good publications, depends what country you live in?
It is good for balance that you give the positive point of view. I know this is an essential med for you and you are able to manage your OH. I know DAs have also been helpful for others on this board.
That said, for a patient who does not require a DA, dizzlyness / lightheadeness upon standing is a dire indication. To avoid possible permanent disabilty the DA must be withdrawn as quickly as possible. Even if a lower dose seems satisfactory it may still be doing lasting damage.
Thank you this a great board. It is good to see advice from both sides.
I am in the UK. I lowered what i was taking to 4mg and i seem to feel better.
Wishing everyone well.
When we make recommendations here , we should be giving our experience only. Some of the people here are professional health care and some are laymen just very experienced with PD while some people know nothing and give recommendations anyway. Any one who changes his medication on the advise of someone ,anyone that he does not know on the internet without first seeking professional medical advise is very foolish.
My advice Theyakin would be- research PD and your options; medication, supplements, exercise, change of lifestyle etc. There is no hurry to chuck meds down your throat the minute you get dx- you have probably had PD for 5 yearsalready so it won't kill you to not take meds. Take the news in and become informed we all get different symptoms and react differently to meds, a doctors advice is that advice.
Its a different life now and if anything you appreciate it more now - we are all mortal just some of us have had a wake up call.
Good luck- this forum is a great source of advice and support frompeople who will get you.
That little bump in the road over medication may have given you an opportunity to take this ride a bit more seriously. It is never too early to acknowledge that you have PD and start planning so that this journey will be easier on you. The sooner you start to take action the better.
Retirement, fiances, EXERCISE, support groups , access to care , reduction of stress , downsizing , bucket lists, EXERCISE understanding how your PD is different and how your family and friends are prepared. You are the only one, that can do it , do it now. PLAN
MMMM did I say that before
Spoke with Neuro and he told me to lower the dose weekly and to come of it.
And then to take Sinemet (I think he said that it started with an S).
What is the difference with ropinirole and sinemet?
Thanks
Now down to 2 mg of ropinirole and feel a lot better. Now need to decide on sinemet any advice? Is it better to wait and see how I get on without meds?
Newbie
Warning : another happy post
What would you do ?
