[steffi 001]

Hi...can anyone advise me.I know I should be asking my neurologist,but am months overdue for my appointment and need to see him...meanwhile can anyone tell me what the highest dose of ROPINAROLE and SINEMET might be.;
present dose is;
2 ROPINAROLE X 4 PER DAY
1 SINEMET X 4 PER DAY
1 SINEMET CR X 1 PER DAY.

I am clearly not managing now,finding that I am increasingly having to pop an extra dose most days and my OFF periods are becoming more frequent.

Strangely,I am finding also,that whereas previously,the succession of doses kept me fairly mobile throughout the day,now,even if I think I am dosing in plenty of time,I become immobile just after taking my medication.This lasts about 3/4 hour.

I guess I have been on Sinemet for about 4 years.

Am I close to the maximum dose yet?
Is there another drug I might move onto yet before surgery,or is there a drug which can maximise the dose that I am on,making it more effective?

Guess I`m coming to you guys,before hearing it from the neuro.You`ll have a gentler way of breaking any glum news...lol

Thanks
x

[chasmo]

if you tell us the actual size (in mgs) of your sinemet and ropinarole.

have you tried a COMT inhibitor??

Charlie

[steffi 001]

Thanks Chasmo;

ROPINAROLE 2mg 8 tablets daily
SINEMET 25/100 4 tablets daily
HALF SINEMET CR 25/100 1 tablet with my last dose

I started by boosting the dose with just the odd ropinarole...now I`m taking an extra dose of rop and sin.

I am also falling asleep at inappropriate times...like in the middle of a conversation....mainly whilst a passenger in the car.Have often found myself being levered off the gearstick and shoved back to my side of the vehicle.

Is this a side effect of medication or the disease itself?

Haven`t been informed of a COMT inhibitor

[lou_lou]

dear steffi,
They the (pharmacist's) have eight years of study and are actually qualified in the knowledge of dosing patients - ,
because of this the doctors -will phone them for this advice...
be safe - not sorry- okay?

[rosebud]

It's probably the ropineral thats causing you to fall asleep...or maybe your just bored I know one of those agonists is a kingpin when it comes to putting some people to sleep. Never at the apprropriate time of course.

I take nearly twice as much sinemet as you and am still cruising (define cruising...lol) at 10 years of this crap. I have very little dyskinesia IF I stay away from sugar and foods on the high GI list. At around the four year mark I was taking close to what you take, but no agonist. I am now on Mirapex as well. It's really hard to compare ourselves because there are soooo many variables in our lives not the least of which is our personality which I think plays a huge role in how our disease progresses. Well thats just my thoughts on your question. It of course comes with the mandatory disclaimer "but I'm not qualified to tell you anything" so take it all with a grain of salt as the saying goes, and do carry on. Cheers.

[Stitcher]

Steffi,

Requip/ropinirole is a med I didn't take for long. One day four years ago, I was driving at 70 miles an hour on Interstate 4 in Central Florida between Tampa and the East Coast of FL. One moment I remember no cars. The next moment there were suddenly car around me. When I arrived at Paula's home I told her about the event, and she said I had a sleep-attack. I quit Requip right away.

Many PWPs who have taken Requip will tell you about their sleep-attacks. I have a friend in northern PA who would fall asleep while I was having a conversation with her, without even realizing it. She is also now off Requip and much happier and alert for discontinuing the med.

I encourage you to talk to your doctor about your medication side effects. I would hate to hear that you fell from a higher place than sitting in a chair; e.g. while standing on a hard floor, coming down stairs.

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What side effects may I notice from taking ropinirole?

Side effects that you should report to your prescriber or health care professional as soon as possible:
Rare or Less common:
•chest pain
•fainting
•falling
•fast or irregular heartbeat
•increase or decrease in blood pressure
•joint or muscle pain
•loss of bladder control
•mental depression, anxiety, nervousness or other changes in behavior or mood
•numbness, tingling, or prickly sensations
•shortness of breath, troubled breathing, tightness in chest, or wheezing
•sudden sleep episodes, even while doing normal activities
•trouble swallowing
•uncontrollable movements of the arms, face, hands, head, mouth, shoulders, or upper body
•vision changes

More common:
•confusion
•drowsiness
•hallucinations (seeing or hearing things that are not there)
•vomiting]

Side effects that usually do not require medical attention (report to your prescriber or health care professional if they continue or are bothersome):
•clumsiness, feeling unsteady, or dizziness, especially early in treatment
•dry mouth
•flushing
•headache
•increased sweating
•nausea
•tremor
•yawning

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What are the possible side effects of Requip?

• Most people who take Requip tolerate it well. The most commonly reported side effects in people taking Requip for RLS are nausea, vomiting, dizziness, and drowsiness or sleepiness. You should be careful until you know if Requip affects your ability to remain alert while doing normal daily activities, and you should watch for the development of significant daytime sleepiness or episodes of falling asleep. It is possible that you could fall asleep while doing normal activities such as driving a car, doing physical tasks, or using hazardous machinery while taking Requip. Your chances of falling asleep while doing normal activities while taking Requip are greater if you are taking other medicines that cause drowsiness.[ e.g. your sleeping medication]
  
• When you start taking Requip or when you increase your dose, you may feel dizzy, nauseated, sweaty or faint, when first standing up from sitting or lying down. Therefore, do not stand up quickly after sitting or lying down, particularly if you have been sitting or lying down for a long period of time. Take a minute sitting on the edge of the bed or chair before you get up.
  
• Some patients taking ropinirole have shown urges to behave in a way unusual for them. Examples of this are an unusual urge to gamble or increased sexual urges and/or behaviors. If you or your family notices that you are developing any unusual behaviors, talk to your doctor.
  
• Hallucinations (unreal sounds, visions, or sensations) have been reported in patients taking Requip. These were uncommon in patients taking Requip for RLS. The risk is greater in patients with Parkinson's disease who are elderly, taking Requip with L-dopa, or taking higher doses of Requip than recommended for RLS.

This is not a complete list of side effects and should not take the place of discussions with your healthcare providers. Your doctor or pharmacist can give you a more complete list of possible side effects. Talk to your doctor about any side effects or problems you may have.

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Take care of yourself,

[steffi 001]

Many many thanks for your advice.all of which I promise to SERIOUSLY take on board.Rosebud,what a relief to know that I have some way to go yet.I hope I didn`t come across as feeling sorry for myself.On the contrary....its just that these recent changes are so very noticeable therefore it was just a
hunch that had me wondering.
Interesting about the sleep and requip. I will request an alternative when I next speak to my neurologist.

Bless you
x

[chasmo]

can cause sleep apneas. Permax, mirapex, and requip all gave me sleep attacks and hallucinations. On mirapex they went away at 6 months and 1 year respectively

2000mg/daily of sinemet, is about the maximum any MDS will prescribe you. You do not take that much sinemet presently.

COMT inhibitor's are tolcapone and entolcapone, Tasmar and Comtan. Either will usually smooth out your Sinemet uptake and allow you to get by with less sinemet.

[reverett123]

...in our tolerance of meds. I do very well with requip though i did get sleepy at first. The max recommended dose is 24 mg daily but that number was almost picked out at random since the original work found nothing to define that number. If you check Medline there is a paper or two on higher doses. I myself have gone as high as 40 mg but definitely without my neuro's blessing. But some fall asleep at the slightest dose.

[Evon]

Hi Steffi My meds include 13 mgs. Requip a day and 4 tablets of Sinemet
25/100 a day. I found that I had to stagger my meds through out the day. I feel like I am always popping a pill. When I take a whole dose at once I seem to get a head rush and I feel awful, both physically and mentally. I guess what ever works for you is the way to look at it. I have never fallen asleep but I do come over very sleepy about an hour after taking the Requip. I also feel that I do have compulsive behaviour which hasn't got me into trouble yet. I have worked up to this dose in just over 3 years. My worst symptom is dystonia which seems to be relieved by the Sinemet more than the Requip.