Ropinerole (Requip) advice please? - Cure Parkinson's

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Ropinerole (Requip) advice please?

jeeves19 profile image
36 Replies

Hi all. I just started on Ropinerole which has been added to my Azilect. I took 2 mg (extended release) for 2 weeks and 2 days ago titrated up to 4mg. Can't say I've noticed much therapeutic difference yet but two things I definitely have noticed are 1) Headaches and 2) Constipation. These are a surprise to me as I was awaiting nausea and hallucinations, neither of which has happened so far.

I'm told that these symptoms may lessen with time but I'm curious to know if members of the community have had anything similar and if there are any strategies for the constipation. I've eaten buckets of prunes which has kept me reasonably regular but I'm surprised at the amount of fiber I'm ingesting just to keep me at this stage.

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36 Replies
Bailey_Texas profile image
Bailey_Texas

Beware of compulsive behavior it will sneak up on you. IF you ahve a care giver make them aware of the possible side effects.

As far as the constipation i just go to the toilet and try to go even f i don't feel the urge.

Of course exercise helps all side effects.

Syncletica profile image
Syncletica

For constipation, try Mag-07 available from Amazon. It is non-habit forming.

1/ All PD medications have side effects , you need to find the one that best suits you.

2/ All have to be started very slowly letting your body get used to them

3/ All must be weaned off slowly if you decide to discontinue taking them

4/ The side effects may appear or become worse in time

5/ Discuss with your Neurologist and try to get by on the least amount of meds that still allows you to function satisfactorily

6/ Meds are intended to only result in a reduction in PD complaints not to eliminate them .

7/ Too much medication can be worse than not enough

8/ Strenuous, driven exercise can reduce the PD symptoms dramatically an reduce the amount of medication necessary, but most people will tell you that you will still need meds and they are the foundation on which you stand.

9/ There are many types of exercise , some of which will probably work for you. Strenuous exercise is easily sloughed off and ignored and you often need, routine and help from others

more

I did a previous post on what the factors of PD treatment are. Medications / Exercise / Rest / Proper food / routine /attitude and more but meds is number one.

Good luck

jeeves19 profile image
jeeves19 in reply to

Thanks for your time Gymbag. Generous post. Hope all's well with you.

in reply to jeeves19

Watch Carefully

I have severe rashes on legs, and swollen feet and can fall asleep standing up so I stopped driving ,fell asleep twice waiting for a green light and can not feel the soles of my feet which leads to imbalance and inability to feel gas or brake pedal. My MD and I believe that it is all allergic reaction to Ropinerole (Requip) but no choice. reaction to other drugs is worse. This is a very strong medication but it is like having one more birthday when you are my age and you can't believe how old you have become but "It beats the alternative"

andrewij profile image
andrewij

Ropinirole is a good drug, and effective, it may take up to three weeks properly. As Bailey_Texas has stated below, be very aware of any signs of compulsive behaviour. It gave me all sorts of problems, mood swings and compulsive urges. I had to come off it, unfortunately.

NanCyclist profile image
NanCyclist

Drink buckets of water. I take my 8 mg of Requip XL at night. At first they gave me the real thing, then switched me to generic when that became available. I was allergic to the generic and now pay an arm and a leg for the real thing. I find that having my Sinemet in the day and the Requip at night works quite well.

Niludi profile image
Niludi in reply to NanCyclist

Hi nancyçlist

I used to take requip XL at night but I was told by my PD nurse that ideally it should be taken in the morning as it helps with the daily activities during the day other wise the best part of the meds are wasted if taken at night,so now I take both the requip XL and siñemet together in the morning . But I guess if it helps you then it's fine.I would prefer to take the requip XL at night.

Niludi

NanCyclist profile image
NanCyclist in reply to Niludi

As we learn daily, what works for one PwP doesn't necessarily work for another. I was told to take ReQuipXL 8 mg with my morning C/L but I quickly realized that my body had gone without dopamine all night and in the morning I was getting a double whammy. I was also waking up for a couple of hours each night. So I started taking the RQ at night to even things out. It works for me. I generally sleep 6-7 hours or more each night.

When RQ came out as a generic a few years ago the insurance company understandably substituted it for the more expensive "real" drug. I reacted to the binding ingredients with big nausea for hours among other things. I had to go back to the original and pay the extreme difference. As many have said, it's important to watch out for compulsive behaviors with any dopamine agonist. I went nuts with Mirapax but was fine with Neupro and ReQuip, except I developed chemical burns with the Neupro patch so had to give that up.

I find that the Sinemet gives my body the flexibility to do all the exercise that mitigates many symptoms. The dopamine agonist enables me to take a minimum amount of Sinemet. It's a little game we all play, trying to minimize the amount of meds and maximize the joys in our days. But don't forget that what works for me won't necessarily work for you. We all have to listen to our own bodies and our doctors.

Niludi profile image
Niludi in reply to NanCyclist

Hi ñ an cyclist

I totally agree with you.like I said I used to take it at night but had to change to mornings.but since last 2/3 days I actually due to forgetting taking in the morning I have been taking it at bedtime and I have noticed the difference so I am going to take this at bedtime as it helps me to sleep more hours then I usually do . and I get up without feeling lethargic too.

Thank you

Niludi

NanCyclist profile image
NanCyclist in reply to Niludi

We're here to help each other.

jeeves19 profile image
jeeves19 in reply to NanCyclist

Thanks Nan. Good to hear from you.

in reply to NanCyclist

there is a generic?

see my post above THANKS I m on it

Niludi profile image
Niludi

Hello jeeves 19

I am on roping role I too started on 2mg ànd now I am on 16mg.the side effects are mainly nausea and sickness.which are awful and not to mention compulsive behaviour.and also suddenonset of drowsiness especially after a meal and if you drive please be very careful.because the drowsiness comes and takes over you like an alien.try not to drive after taking ropinerol but I have not experienced constipation or headaches.maybe it is the azilect taken with ropinerol causing your symptoms.I should check with ur doc.but be vigilant of the compulsive behaviour I have that ,I have been driving for 21yrs with no driving fines etc the all of a sudden qi have made 2 offences one jumping the red traffic light and second speeding within 4 months.and now I am obsessed with cleaning and rearranging the kitchen at any hour of the day or night.the worse thing I feel drowsy and fall asleep during my meal or when I am chatting to someone it's awful.once after finishing work I sat in the car and felt drowsy so I closed my eyes for 5mins and woke up after 1hour on a Sunday evening in an empty car park, and sometimes the sudden urge to sleep while driving comes so now I recognise the symptoms I stop have a little nap usually lasts for up to 10mins.I have actually stopped driving long distances ì don't do more then an hour.the nausea and sickness are troublesome the amount of time off I have taken is unbelievable but it settle downs then everytime doc increases the dose it starts.so please be aware of these side effects.for the headaches /constipation see your doctor. and hope you feel better soon .

Niludi

jeeves19 profile image
jeeves19 in reply to Niludi

Thanks Niludi. You seem to be having a tough time of it. Maybe Sinemet would suit you better?

Niludi profile image
Niludi in reply to jeeves19

Well I M taking sinemet as well 3 times a day but I have been taking ropinerole at night since last few days I feel a little more energetic too so I am going to continue . but I have also been given something for sickness and nausea.but this only happens when my dose increases.

Thank you

Niludi

ruff1 profile image
ruff1

My husband is taking Requip - ropinerole 20 mg first thing 5am + 125mg of Stelevo and 1mg asilect, (been diagnosed 10 years) he has slight neausea when he first took requip but not any more. He has a cup of strong coffee and a shower and is good to start the day. He plays golf 9 holes carries his bag,18 holes uses his trolley, goes to the gym 3 X's a week to classes run by a physio, really hard work- no consessions for his parkinsons!! He has just moved the rest of the medication times - (just Stelevo 125 every 3 hours, then stelevo100 at 8 am) so there is a clear hour before he eats found it is def having an effect on making the medication last longer very few 'off' periods the last few days. Everyone is different it's just finding what works for you, but exercise is sooooo important!! 😀😀😀

jeeves19 profile image
jeeves19 in reply to ruff1

Thanks Ruff. Hope all's well with you and your husband. Sounds like it!

R8360V profile image
R8360V

Hi, im currently taking sinemet plus 5 a day sinemet CR 4 a day azilect 1mg a day stomach capsules also plus requip 8mg a day, truthfully i havent had hallucinations or any other side effect up to now for the past 8 years, i started at 47 years old. The only thing i can say is take 2 kiwis in the mornings before breakfast and that will help your constipation. My parkinsons is considered to be either CBD or PSP which i think are thought to be the worst ones there is. I sincerely hope you do alright and have a good quality of life, all the best.

jeeves19 profile image
jeeves19 in reply to R8360V

Out of interest, why do they say you have either of these diseases? I didn't think meds worked for them but you seem to be on quite a few.

R8360V profile image
R8360V in reply to jeeves19

It took about 3 years for them to start working, they nearly gave up and were going to send me for the DBS operation, but all of a sudden they started working so i didnt go for the op. They are all amazed its working, although i take a lot, but who knows maybe a positive attitude does really help.

But i must say i feel awful the majority of days although you see me and you wouldnt say i have parkinsons. Mine is down on paper as Atypical Parkonissm.

jeeves19 profile image
jeeves19 in reply to R8360V

And have you lost your sense of smell?

R8360V profile image
R8360V in reply to jeeves19

No i havent lost my sense of smell on the contrary its sharper dont know why

jeeves19 profile image
jeeves19 in reply to R8360V

Losing smell is more associated with PD (but not in all cases).

Astra7 profile image
Astra7 in reply to R8360V

What sort of symptons do you have?

R8360V profile image
R8360V in reply to Astra7

How do you mean symptons because of the tablets or from the disease?

swva profile image
swva

Never tried one of the agonist. Sinemet seemed like the best option for me.

DianeF profile image
DianeF

Magnesium can help. I also add a spoonful of flax seed and chia seeds to my morning oatmeal. Problem solved!

S70AWD profile image
S70AWD

I started on Ropinirole about three months ago. I started with 2 mg, and was supposed titrate every week to 4 mg, then 6mg, then 8mg. It made me extremely nauseous, gave me headaches and constipation. I eventually got it up to 8 mg, but it took abut two to three weeks before I could tolerate the increase. As far as the nausea, my doctor says to "tough it out." I tried several natural remedies for the constipation, but nothing worked so I am now taking dose of Mirloax once a day. So far no hallucinations and obsessive behaviors, but I'll watch out for it. The overwhelming feeling of sleepiness when driving is difficult to handle, but fortunately I only drive 15 minutes to work and the necessary stores are on the way.

I found it worked great on the tremors once I got it up to 8 mg, but that only lasted a few weeks, then it wore off. I'm sure when I see my neurologist next month, she will increase the dosage again as she mentioned she might go as high as 16 mg.

I take a whole array of medications every day. I have drugs for my thyroid, for pre-diabetes, for Barrett's esophagus, an antidepressant to help me sleep, and medicine so I don't have to pee six times each night. The only drugs I am on currently for PD are Amantadine 100 mg. 3 times a day, and Ropinirole 8 mg. once a day. I am a 66 year old woman, still working, diagnosed three years ago but had symptoms for two or three years prior to the diagnosis. You guys scare me when you talk about all the drugs you take, and in what combinations. It all sounds pretty overwhelming.

jeeves19 profile image
jeeves19 in reply to S70AWD

Thanks. What about the headaches? This is the thing that concerns me and I get a phased/woozy feeling a lot of the time which is sort of dizzying but not quite. I'm thinking of quitting as it's so awful. Do you take the Rop in the morning or evening?

S70AWD profile image
S70AWD in reply to jeeves19

For me, the headaches are mild enough to tolerate them. I also get that light-headed dizzy feeling. I take the 8 mg. of Rop at night as directed by my doctor, and the nausea occurs in the morning. Sometimes it takes me about 30 minutes to get past the nausea and dizziness to get out of bed. I just set my alarm really early.

S70AWD profile image
S70AWD in reply to jeeves19

Also, I've heard that the Requip original drug has much fewer side effects than the Rop, but it costs a fortune.

jeeves19 profile image
jeeves19 in reply to S70AWD

Really? I was told they were the same thing!

Astra7 profile image
Astra7 in reply to jeeves19

Do you take azilect as well? It makes me feel dizzy and wooly so I am back to taking it at night.

jeeves19 profile image
jeeves19 in reply to Astra7

Azilect gave me no symptoms at all. Great drug for me personally.

Jumex2017 profile image
Jumex2017

Please try eating guinoa,plus oats with chia seeds and blended flax seeds and blue berry.this will definitely take away constipation.

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